Form990
Click to see list of attachments
Department of the TreasuryInternal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private foundations)
MediumBullet Do not enter social security numbers on this form as it may be made public.
MediumBullet Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2018
Open to Public Inspection
A For the 2019 calendar year, or tax year beginning 01-01-2018 , and ending 12-31-2018
BCheck if applicable:
CName of organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
 
Doing business as
 
 
Number and street (or P.O. box if mail is not delivered to street address)
ONE EAST WACKER DRIVE
 
Room/suite
City or town, state or province, country, and ZIP or foreign postal code
CHICAGO, IL60601
D Employer identification number

95-3378526
E Telephone number

G Gross receipts $ 2,632,587
F Name and address of principal officer:
JANET HIESHETTER
ONE EAST WACKER DRIVE 1730
CHICAGO,IL606011905
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
WWW.DYSTONIA-FOUNDATION.ORG
H(a)
Is this a group return for
subordinates?
H(b)
Are all subordinates
included?
If "No," attach a list. (see instructions)
H(c)
Group exemption number MediumBullet  
K Form of organization:  
L Year of formation: 1977
M State of legal domicile: CA
Part I
Summary
Activities & Governance 1 Briefly describe the organization’s mission or most significant activities: THE MISSION OF THE DMRF IS TO ADVANCE RESEARCH FOR MORE EFFECTIVE TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA, TO PROMOTE AWARENESS AND EDUCATION AND TO SUPPORT THE WELL BEING OF DYSTONIA AFFECTED INDIVIDUALS AND FAMILIES.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 23
4 Number of independent voting members of the governing body (Part VI, line 1b) ..... 4 23
5 Total number of individuals employed in calendar year 2018 (Part V, line 2a) ...... 5 12
6 Total number of volunteers (estimate if necessary) ............. 6 725
7a Total unrelated business revenue from Part VIII, column (C), line 12 ........ 7a 0
b Net unrelated business taxable income from Form 990-T, line 34 ......... 7b  
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 2,310,208 2,293,476
9 Program service revenue (Part VIII, line 2g) .........   0
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 39,604 119,357
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) 7,574 4,834
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12) 2,357,386 2,417,667
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 903,011 868,356
14 Benefits paid to or for members (Part IX, column (A), line 4).....   0
15 Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10) 946,492 964,841
16a Professional fundraising fees (Part IX, column (A), line 11e) .....   0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet299,679    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 759,483 836,861
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 2,608,986 2,670,058
19 Revenue less expenses. Subtract line 18 from line 12....... -251,600 -252,391
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 5,171,798 4,662,461
21 Total liabilities (Part X, line 26)............. 953,412 987,735
22 Net assets or fund balances. Subtract line 21 from line 20..... 4,218,386 3,674,726
Part II
Signature Block
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.
Sign Here
JumboBullet
Signature of officer Date
JumboBullet
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
Preparer's signature
Date
PTIN
Firm's name MediumBullet

Firm's EIN MediumBullet
Firm's address MediumBullet



Phone no.
May the IRS discuss this return with the preparer shown above? (see instructions) ..........
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y Form 990 (2018)
Form 990 (2018)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response or note to any line in this Part III..............
1
Briefly describe the organization’s mission: THE FOUNDATION HAS THREE MAIN PURPOSES: (1)TO ADVANCE DYSTONIA RESEARCH BY AWARDING GRANTS TO BASIC, TRANSLATIONAL, AND CLINICAL INVESTIGATORS AND TO MEDICAL/SCIENTIFIC INSTITUTIONS COMMITTED TO FINDING THE CAUSE AND CURE FOR ALL FORMS OF DYSTONIA; (2)TO PROMOTE DYSTONIA AWARENESS BY SPONSORING WORKSHOPS AND SYMPOSIUMS FOR MEDICAL PROFESSIONALS AND PATIENTS, BY EDUCATING MEMBERS OF CONGRESS ABOUT DYSTONIA AND THE NEEDS OF THE DYSTONIA COMMUNITY, BY ADVOCATING FOR THOSE AFFECTED BY DYSTONIA AND THEIR FAMILIES, AND BY PRODUCING AND DISTRIBUTING EDUCATIONAL MATERIALS, BOTH PRINTED AND ELECTRONIC; AND (3)TO SPONSOR DYSTONIA PATIENT AND FAMILY SUPPORT GROUPS AND EDUCATION PROGRAMS INCLUDING THE CREATION AND PROMOTION OF VIRTUAL EDUCATION MEETINGS AND ELECTRONIC SOCIAL NETWORKS FOR DYSTONIA-AFFECTED PERSONS WHO ARE UNABLE TO ATTEND MEETINGS AND FORUMS.
2
Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? .....................
If "Yes," describe these new services on Schedule O.
3
Did the organization cease conducting, or make significant changes in how it conducts, any program
services? ...........................
If "Yes," describe these changes on Schedule O.
4
Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.
4a (Code:   ) (Expenses $ 1,442,242 including grants of $ 868,356 ) (Revenue $   )
SCIENCE-INCLUDES:ISSUING 3 REQUESTS FOR APPLICATIONS, MANAGING THE PEER REVIEW PROCESS OF 33 SUBMITTED GRANT RESEARCH FELLOWSHIP AND CLINICAL FELLOWSHIP APPLICATIONS, SELECTING, FUNDING AND MANAGING 9 RESEARCH GRANTS, 4 RESEARCH FELLOWSHIPS, 1 CLINICAL FELLOWSHIPS, AND 3 RESEARCH CONTRACTS, ALL AIMED AT CREATING A BETTER UNDERSTANDING OF THE PATHOPHYSIOLOGY OF DYSTONIA, IDENTIFYING GENES, AND DEVELOPING IMPROVED TREATMENTS AND ULTIMATELY A CURE FOR DYSTONIA;MEETING WITH PHARMACOLOGICAL AND BIOTECH COMPANIES TO ENGAGE THEM IN THE DEVELOPMENTOF TREATMENTS FOR DYSTONIA;CONTINUED FUNDING OF A CLINICAL FELLOWSHIP PROGRAM DESIGNED TO SUPPORT TRAINING OF PHYSICIANS IN PREPARATION FOR A CLINICAL AND/OR RESEARCH CAREER IN MOVEMENT DISORDERS WITH SPECIAL FOCUS ON DYSTONIA;SPONSORING AND PARTICIPATING IN DOMESTIC AND INTERNATIONAL SCIENTIFIC MEETINGS INCLUDING THE AMERICAN ACADEMY OF NEUROLOGY ANNUAL MEETING; THE INTERNATIONAL PARKINSON AND MOVEMENT DISORDER SOCIETY SECOND PAN AMERICAN SECTION CONGRESS; TARGETED DRUG DISCOVERY FOR DYSTONIA MEETING; FOURTH DMRF MYOCLONUS DYSTONIA WORKSHOP;AND CHILD NEUROLOGY SOCIETY 47TH ANNUAL MEETING.REVIEWING CURRENT RESEARCH DATA AND EXPLORING STUDIES NEEDED TO ACCELERATE IMPROVED TREATMENTS;SUPPORTING AND MAINTAINING THE AVAILABILITY OF RESOURCES TO ACCELERATE DYSTONIA RESEARCH GLOBALLY SUCH AS THE DYSTONIA BRAIN COLLECTIVE AND GLOBAL DYSTONIA REGISTRY FOR USE BY THE INTERNATIONAL DYSTONIA COMMUNITY;SERVING ITS NINTH YEAR WITH NO COMPENSATION AS THE ADMINISTRATIVE CENTER FOR THE DYSTONIA COALITION WHICH WAS AWARDED A NATIONAL INSTITUTES OF HEALTH (NIH) GRANT TO DEVELOP AN INTERNATIONAL DYSTONIA CLINICAL NETWORK CONSISTING OF FOUR PROJECTS: 1) DEVELOPING A NATURAL HISTORY STUDY AND BIOREPOSITORY; 2) REVISING THE TWSTRS RATING SCALE FOR CERVICAL DYSTONIA; 3) DEVELOPING, TESTING AND REFINING A NEW DIAGNOSTIC TOOL FOR SPASMODIC DYSTONIA; AND 4) DEVELOPING AND VALIDATING TOOLS TO AID IN THE DIAGNOSIS AND TREATMENT OF BLEPHAROSPASM. THE DMRF WAS RESPONSIBLE FOR MANAGING $530,546 RESTRICTED FOR DYSTONIA COALITION WORK NOT INCLUDED IN THE FOUNDATION'S REVENUES AND EXPENSES.
4b (Code:   ) (Expenses $ 419,167 including grants of $   ) (Revenue $   )
AWARENESS AND EDUCATION-INCLUDES:PUBLISHING THE "DYSTONIA DIALOGUE" NEWS MAGAZINE THREE TIMES A YEAR UNDER THE DIRECTION OF THE VOLUNTEER EDITORIAL BOARD AND DISTRIBUTING IT VIA MAIL OR ELECTRONIC COPY TO OVER 49,000 PATIENTS, FAMILIES, AND INTERESTED PERSONS TO INFORM THEM OF THE LATEST RESEARCH AND FOUNDATION ACTIVITIES; CREATING AND DISSEMINATING OVER TWENTY-FIVE DYSTONIA RELATED EDUCATIONAL RESOURCES AS WELL AS PROMOTING AND DISTRIBUTING A CHILDREN'S BOOK ABOUT DYSTONIA AND CD/DVDS TO REQUESTING INDIVIDUALS TO EDUCATE THEM ABOUT THE VARIOUS FORMS OF DYSTONIA AND TREATMENT OPTIONS; HOSTING A COMPREHENSIVE WEBSITE, WEBINARS, AND ELECTRONIC SOCIAL NETWORKS SUCH AS THE ONLINE DYSTONIA BULLETIN BOARD, TWITTER, FACEBOOK, AND EDUCATIONAL RESOURCES POSTED ON YOUTUBE TO PROVIDE EASY ACCESS TO INFORMATION FOR AFFECTED PERSONS AND THEIR FAMILIES;CREATING AND DISSEMINATING A MONTHLY ELECTRONIC NEWSLETTER AND PERIODIC EMAIL ALERTS TO SHARE INFORMATION ON DYSTONIA RELATED EVENTS, NEWS, AND ACTIVITIES;CREATING AND DISSEMINATING A DYSTONIA AWARENESS PROGRAM DESIGNED TO EMPOWER PEOPLE TO SHARE THEIR PERSONAL STORIES AND INCREASE THE PUBLIC'S AWARENESS OF DYSTONIA;AND PARTICIPATING IN ADVOCACY TO PROMOTE AWARENESS AMONGST LAWMAKERS ON TOPICS IMPORTANT TO DYSTONIA PATIENTS. SEE SCHEDULE O, PART III 4D FOR DETAILS.
4c (Code:   ) (Expenses $ 190,386 including grants of $   ) (Revenue $   )
MEMBERSHIP AND SUPPORT-INCLUDES:PLANNING AND SUPPORTING SEVEN PATIENT SYMPOSIA AND COMMUNITY FORUMS ATTENDED BY PATIENTS AND THEIR FAMILIES WHICH PROVIDE INFORMATION ABOUT CURRENT RESEARCH AND TREATMENT OPTIONS AND AN OPPORTUNITY TO DEVELOP PERSONAL NETWORKS AND REDUCE ISOLATION FOR THOSE AFFECTED BY DYSTONIA;CREATING VIRTUAL EDUCATIONAL FORUMS FOR DYSTONIA-AFFECTED PERSONS AND THEIR FAMILIES WHO ARE UNABLE TO ATTEND MEETINGS AND FORUMS; PROMOTING SUPPORT RESOURCES TO AID IN DISEASE MANAGEMENT AND QUALITY OF LIFE SUCH AS A NETWORK OF SUPPORT GROUPS AND AN ELECTRONIC SOCIAL NETWORK, INCLUDING BULLETIN BOARDS AND TELEPHONE COMMUNICATIONS WITH INDIVIDUALS AFFECTED BY DYSTONIA AND OTHER INTERESTED PARTIES;DEVELOPING NEW SUPPORT GROUPS IN COMMUNITIES ACROSS THE COUNTRY AS AN ENDURING RESOURCE FOR THOSE AFFECTED BY DYSTONIA AND THOSE FAMILIES; PROVIDING ONGOING LEADERSHIP TRAINING FOR VOLUNTEER SUPPORT LEADERS BY CREATING ELECTRONIC FORUMS FOR LEADERS TO SHARE EXPERIENCES AND PROVIDE PEER SUPPORT, PROVIDING WEBINAR TRAINING AND ONGOING SUPPORT FOR SUPPORT LEADERS, AND DISTRIBUTING A SUPPORT GROUP MANUAL WHICH PROVIDES VALUBLE INFORMATION AND RESOURCES FOR EFFECTIVE SUPPORT LEADERSHIP. PROVIDING MEETING MANAGEMENT SUPPORT SUCH AS EMAIL AND POSTAL NOTIFICATIONS AND A WEB-BASED CALENDAR ABOUT UPCOMING SUPPORT GROUP MEETINGS INCLUDING SUPPLYING DYSTONIA BROCHURES TO ALL SUPPORT GROUPS.
4d Other program services (Describe in Schedule O.)
(Expenses $ 122,586 including grants of $   ) (Revenue $   )
4e Total program service expensesMediumBullet2,174,381
Form 990 (2018)
Form 990 (2018)
Page 3
Part IV
Checklist of Required Schedules
Yes
No
1
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule AClick to see attachment.....................
1
Yes
 
2
Is the organization required to complete Schedule B, Schedule of Contributors (see instructions)? Click to see attachment...
2
Yes
 
3
Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part IClick to see attachment.............
3
 
No
4
Section 501(c)(3) organizations. Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part IIClick to see attachment..............
4
Yes
 
5
Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Revenue Procedure 98-19? If "Yes," complete Schedule C, Part IIIClick to see attachment.................
5
 
No
6
Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part IClick to see attachment..................
6
 
No
7
Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part IIClick to see attachment...
7
 
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes," complete Schedule D, Part IIIClick to see attachment.............
8
 
No
9
Did the organization report an amount in Part X, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IVClick to see attachment..............
9
Yes
 
10
Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi-endowments? If "Yes," complete Schedule D, Part VClick to see attachment......
10
 
No
11
If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X as applicable.
a
Did the organization report an amount for land, buildings, and equipment in Part X, line 10?
If "Yes," complete Schedule D, Part VI.Click to see attachment...................
11a
Yes
 
b
Did the organization report an amount for investments—other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIClick to see attachment.......
11b
 
No
c
Did the organization report an amount for investments—program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIIClick to see attachment.......
11c
 
No
d
Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IXClick to see attachment............
11d
 
No
e
Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part XClick to see attachment
11e
Yes
 
f
Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part XClick to see attachment
11f
 
No
12a
Did the organization obtain separate, independent audited financial statements for the tax year?
If "Yes," complete Schedule D, Parts XI and XII Click to see attachment.................
12a
Yes
 
b
Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional Click to see attachment
12b
 
No
13
Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E
13
 
No
14a
Did the organization maintain an office, employees, or agents outside of the United States? .....
14a
 
No
b
Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV.........Click to see attachment
14b
Yes
 
15
Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization? If “Yes,” complete Schedule F, Parts II and IV.....Click to see attachment
15
Yes
 
16
Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals? If “Yes,” complete Schedule F, Parts III and IV...Click to see attachment
16
 
No
17
Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I(see instructions) ....Click to see attachment
17
 
No
18
Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II............ Click to see attachment
18
Yes
 
19
Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III...................Click to see attachment
19
 
No
20a
Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....
20a
 
No
b
If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?
20b
 
 
21
Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II.....Click to see attachment
21
Yes
 
22
Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........Click to see attachment
22
 
No
Form 990 (2018)
Form 990 (2018)
Page 4
Part IV
Checklist of Required Schedules (continued)
Yes
No
23
Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5 about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J....................... Click to see attachment
23
Yes
 
24a
Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a...............
24a
 
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...
24b
 
No
c
Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds? ...............
24c
 
No
d
Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?...
24d
 
No
25a
Section 501(c)(3), 501(c)(4), and 501(c)(29) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I............
25a
 
No
b
Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I...................
25b
 
No
26
Did the organization report any amount on Part X, line 5, 6, or 22 for receivables from or payables to any current or former officers, directors, trustees, key employees, highest compensated employees, or disqualified persons? If "Yes," complete Schedule L, Part II................
26
 
No
27
Did the organization provide a grant or other assistance to an officer, director, trustee, key employee, substantial contributor or employee thereof, a grant selection committee member, or to a 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part III.........
27
 
No
28
Was the organization a party to a business transaction with one of the following parties (see Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):
a
A current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L,
Part IV........................
28a
 
No
b
A family member of a current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV.....................
28b
 
No
c
An entity of which a current or former officer, director, trustee, or key employee (or a family member thereof) was an officer, director, trustee, or direct or indirect owner? If "Yes," complete Schedule L, Part IV...
28c
 
No
29
Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..Click to see attachment
29
Yes
 
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M .............Click to see attachment
30
 
No
31
Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N, Part I.
31
 
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II...........
32
 
No
33
Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I........
33
 
No
34
Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Part II, III, or IV, and Part V, line 1.........................
34
 
No
35a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?
35a
 
No
b
If ‘Yes’ to line 35a, did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," complete Schedule R, Part V, line 2 ...
35b
 
 
36
Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2.............
36
 
No
37
Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VI
37
 
No
38
Did the organization complete Schedule O and provide explanations in Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this Part V...........
Yes
No
1a
Enter the number reported in Box 3 of Form 1096 Enter -0- if not applicable ..
1a
13
b
Enter the number of Forms W-2G included in line 1a. Enter -0- if not applicable .
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................
1c
Yes
 
Form 990 (2018)
Form 990 (2018)
Page 5
2a
Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return ..................
2a
12
b
If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file (see instructions)
2b
Yes
 
3a
Did the organization have unrelated business gross income of $1,000 or more during the year?...
3a
 
No
b
If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...
3b
 
No
4a
At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)? ..
4a
 
No
b
If "Yes," enter the name of the foreign country: MediumBullet
See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).
5a
Was the organization a party to a prohibited tax shelter transaction at any time during the tax year? ..
5a
 
No
b
Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?
5b
 
No
c
If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............
5c
 
 
6a
Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions? ...
6a
 
No
b
If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? ......................
6b
 
 
7
Organizations that may receive deductible contributions under section 170(c).
a
Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor? ....................
7a
 
No
b
If "Yes," did the organization notify the donor of the value of the goods or services provided? .....
7b
 
 
c
Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282? .........................
7c
 
No
d
If "Yes," indicate the number of Forms 8282 filed during the year ....
7d
0
e
Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?
7e
 
No
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract? ..
7f
 
No
g
If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required? ......................
7g
 
No
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C? ..........................
7h
 
No
8
Sponsoring organizations maintaining donor advised funds.
Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year? .........................
8
 
No
9a
Did the sponsoring organization make any taxable distributions under section 4966?...
9a
 
No
b
Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?...
9b
 
No
10
Section 501(c)(7) organizations. Enter:
a
Initiation fees and capital contributions included on Part VIII, line 12 ...
10a
 
b
Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities
10b
 
11
Section 501(c)(12) organizations. Enter:
a
Gross income from members or shareholders .........
11a
 
b
Gross income from other sources (Do not net amounts due or paid to other sources against amounts due or received from them.) ..........
11b
 
12a
Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041?
12a
 
No
b
If "Yes," enter the amount of tax-exempt interest received or accrued during the year.
12b
 
13
Section 501(c)(29) qualified nonprofit health insurance issuers.
a
Is the organization licensed to issue qualified health plans in more than one state?
Note. See the instructions for additional information the organization must report on Schedule O.
13a
 
No
b
Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ....
13b
 
c
Enter the amount of reserves on hand ............
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
No
b
If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..
14b
 
 
15
Is the organization subject to the section 4960 tax on payment(s) of more than $1,000,000 in remuneration or excess parachute payment(s) during the year? If "Yes," see instructions and file Form 4720, Schedule N .....
15
 
No
16
Is the organization an educational institution subject to the section 4968 excise tax on net investment income?
If "Yes," complete Form 4720, Schedule O ................
16
 
No
Form 990 (2018)
Form 990 (2018)
Page 6
Part VI
Governance, Management, and Disclosure For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response or note to any line in this Part VI..............
Section A. Governing Body and Management
Yes
No
1a
Enter the number of voting members of the governing body at the end of the tax year
1a
23
If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
b
Enter the number of voting members included in line 1a, above, who are independent
1b
23
2
Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee? .................
2
Yes
 
3
Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person? .
3
 
No
4
Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? .
4
 
No
5
Did the organization become aware during the year of a significant diversion of the organization’s assets? .
5
 
No
6
Did the organization have members or stockholders? ................
6
 
No
7a
Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body? ....................
7a
 
No
b
Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................
7b
 
No
8
Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:
a
The governing body? .......................
8a
Yes
 
b
Each committee with authority to act on behalf of the governing body? ............
8b
Yes
 
9
Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization’s mailing address? If "Yes," provide the names and addresses in Schedule O.......
9
 
No
Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)
Yes
No
10a
Did the organization have local chapters, branches, or affiliates? ............
10a
Yes
 
b
If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?
10b
Yes
 
11a
Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................
11a
Yes
 
b
Describe in Schedule O the process, if any, used by the organization to review this Form 990. .....
12a
Did the organization have a written conflict of interest policy? If "No," go to line 13.......
12a
Yes
 
b
Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................
12b
Yes
 
c
Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe in Schedule O how this was done...................
12c
Yes
 
13
Did the organization have a written whistleblower policy? ...............
13
Yes
 
14
Did the organization have a written document retention and destruction policy? .........
14
Yes
 
15
Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?
a
The organization’s CEO, Executive Director, or top management official ...........
15a
Yes
 
b
Other officers or key employees of the organization ................
15b
 
No
If "Yes" to line 15a or 15b, describe the process in Schedule O (see instructions).
16a
Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ......................
16a
 
No
b
If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements? ............
16b
 
 
Section C. Disclosure
17
List the States with which a copy of this Form 990 is required to be filedMediumBullet
AK , AL , AZ , CA , CO , CT , FL , GA , IL , KS , KY , MD , ME , ME , MI , MN , MO , MS , NC , NH , NJ , NM , NY , OH , OK , OR , PA , RI , SC , TX , UT , VA , WA , WI
18
Section 6104 requires an organization to make its Form 1023 (or 1024-A if applicable), 990, and 990-T (501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.
19
Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.
20
State the name, address, and telephone number of the person who possesses the organization's books and records:
MediumBulletJANET L HIESHETTERONE EAST WACKER DRIVE   CHICAGO,IL60601 (312) 755-0198
Form 990 (2018)
Form 990 (2018)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response or note to any line in this Part VII..............
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

RoundBullet List all of the organization’s current key employees, if any. See instructions for definition of "key employee."
RoundBullet List the organization’s five current highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (Box 5 of Form W-2 and/or Box 7 of Form 1099-MISC) of more than $100,000 from the
organization and any related organizations.

RoundBullet List all of the organization’s former officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.

RoundBullet List all of the organization’s former directors or trustees that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.

List persons in the following order: individual trustees or directors; institutional trustees; officers; key employees; highest
compensated employees; and former such persons.
Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.
(A)
Name and Title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W- 2/1099-MISC) 		(E)
Reportable compensation from related organizations (W- 2/1099-MISC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(1) SAMUEL BELZBERG......................................................................
Chairman
 1.00
.................
0.00 		X   X       0 0 0
(2) ARTHUR KESSLER......................................................................
President
 5.00
.................
0.00 		X   X       0 0 0
(3) DENNIS KESSLER......................................................................
Vice President
 2.00
.................
0.00 		X   X       0 0 0
(4) RICHARD LEWIS......................................................................
Vice President
 2.00
.................
0.00 		X   X       0 0 0
(5) BARBARA KESSLER......................................................................
Vice President
 2.00
.................
0.00 		X   X       0 0 0
(6) KAREN ROSS......................................................................
Vice President
 1.00
.................
0.00 		X   X       0 0 0
(7) ROSALIE LEWIS......................................................................
Vice President
 1.00
.................
0.00 		X   X       0 0 0
(8) MARK RUDOLPH......................................................................
Treasurer
 3.00
.................
0.00 		X   X       0 0 0
(9) FRANCES BELZBERG......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(10) MARILYNNE HERBERT......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(11) STEFANIE JACKSON......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(12) DIANE RUDOLPH......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(13) JOHN DOWNEY......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(14) NANCY HARRIS......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(15) ERWIN JACKSON......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(16) BILL MCLAUGHLIN......................................................................
Director
 1.00
.................
0.00 		X           0 0 0
(17) PAULA SCHNEIDER......................................................................
Director
 3.00
.................
0.00 		X           0 0 0
Form 990 (2018)
Form 990 (2018)
Page 8
Part VII
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)
(A)
Name and Title 		(B)
Average hours per week (list any hours for related organizations below dotted line) 		(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee) 		(D)
Reportable compensation from the organization (W- 2/1099-MISC) 		(E)
Reportable compensation from related organizations (W- 2/1099-MISC) 		(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(18) SANDRA WEIL........................................................................
Director
 3.00
.......................0.00 		X           0 0 0
(19) JON DAVIS........................................................................
Director
 1.00
.......................0.00 		X           0 0 0
(20) PAMELA SLOATE........................................................................
Director
 1.00
.......................0.00 		X           0 0 0
(21) RON HERSCH........................................................................
Director
 1.00
.......................0.00 		X           0 0 0
(22) CAROLE RAWSON........................................................................
Director
 1.00
.......................0.00 		X           0 0 0
(23) LIZ RAWSON........................................................................
Director
 1.00
.......................0.00 		X           0 0 0
(24) DONNA DRISCOLL........................................................................
Director
 1.00
.......................0.00 		X           0 0 0
(25) JANET HIESHETTER........................................................................
Sec/EXEC DIR
 59.00
.......................0.00 		    X       156,494 0 40,321
(26) JAN TELLER........................................................................
CHIEF SCI OFFC/ADV
 50.00
.......................0.00 		        X   136,738 0 21,904
(27) DEBORAH DURRER........................................................................
DIR DEVELOPMENT
 40.00
.......................0.00 		        X   90,506 0 35,451






1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)...........MediumBullet 383,738   97,676
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization MediumBullet2
Yes
No
3
Did the organization list any former officer, director or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ..............
3
 
No
4
For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such
individual...........................
4
Yes
 
5
Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person ........
5
 
No
Section B. Independent Contractors
1
Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.
(A)
Name and business address 		(B)
Description of services 		(C)
Compensation
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization MediumBullet0
Form 990 (2018)
Form 990 (2018)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII.............
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512 - 514
Contributions, Gifts, GrantAmt and OtherAmt Similar Amounts 1a Federated campaigns..1a 9,891
b Membership dues..1b  
c Fundraising events..1c 466,881
d Related organizations1d  
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and similar amounts not included above1f 1,816,704
g Noncash contributions included in lines 1a - 1f:$ 146,364
h Total. Add lines 1a-1f.......MediumBullet 2,293,476
Program Service RevenueAmt Business Code
2a
b
c
d
e
f All other program service revenue.        
g Total. Add lines 2a–2f ....MediumBullet 0
OtherAmtRevenueAmt 3 Investment income (including dividends, interest, and othersimilar amounts) ......MediumBullet 119,673     119,673
4 Income from investment of tax-exempt bond proceedsMediumBullet 0      
5 Royalties...........MediumBullet 0      
(ii) Personal (i) Real
6a Gross rents    
b Less: rental expenses    
c Rental income or (loss)    
d Net rental income or (loss)......MediumBullet 0      
(ii) Other (i) Securities
7a Gross amount from sales of assets other than inventory   146,441
b Less: cost or other basis and sales expenses   146,757
c Gain or (loss)   -316
d Net gain or (loss).....MediumBullet -316 -316    
8a Gross income from fundraising events (not including $ 466,881of contributions reported on line 1c). See Part IV, line 18 ....
a 68,163
b Less: direct expenses ...b 68,163
c Net income or (loss) from fundraising events..MediumBullet 0    
9a Gross income from gaming activities.
See Part IV, line 19 ...
a  
b Less: direct expenses ...b  
c Net income or (loss) from gaming activities..MediumBullet 0      
10a Gross sales of inventory, less
returns and allowances ..
a  
b Less: cost of goods sold ..b  
c Net income or (loss) from sales of inventory..MediumBullet 0      
Business Code Miscellaneous Revenue
11a MERCHANDISE SALES 900099 4,834 4,834    
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ...... MediumBullet 4,834
12 Total revenue. See Instructions......MediumBullet 2,417,667 4,518   119,673
Form 990 (2018)
Form 990 (2018)
Page 10
Part IX
Statement of Functional Expenses
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX..............
Do not include amounts reported on lines 6b,
7b, 8b, 9b, and 10b of Part VIII. 		(A)
Total expenses 		(B)
Program service expenses 		(C)
Management and general expenses 		(D)
Fundraising expenses
1 Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 695,356 695,356
2 Grants and other assistance to domestic individuals. See Part IV, line 22 0  
3 Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, line 15 and 16. 173,000 173,000
4 Benefits paid to or for members 0  
5 Compensation of current officers, directors, trustees, and key employees .... 196,816 139,439 20,705 36,672
6 Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .... 0      
7 Other salaries and wages 631,167 446,689 75,204 109,274
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) .... 22,919 16,221 2,730 3,968
9 Other employee benefits ....... 53,625 38,190 1,983 13,452
10 Payroll taxes ........... 60,314 42,686 7,186 10,442
11 Fees for services (non-employees):        
a Management ...... 0      
b Legal ......... 0      
c Accounting ........... 29,365 3,788 25,079 498
d Lobbying ........... 50,653 50,653    
e Professional fundraising services. See Part IV, line 17 0  
f Investment management fees ...... 21,213   21,213  
g Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O) 44,271 42,670   1,601
12 Advertising and promotion .... 0      
13 Office expenses ....... 0      
14 Information technology ...... 36,828 26,350 1,311 9,167
15 Royalties .. 0      
16 Occupancy ........... 89,419 62,072 12,468 14,879
17 Travel ............ 133,242 103,906 1,355 27,981
18 Payments of travel or entertainment expenses for any federal, state, or local public officials . 0      
19 Conferences, conventions, and meetings .... 133,197 124,572 2,618 6,007
20 Interest ........... 0      
21 Payments to affiliates ....... 0      
22 Depreciation, depletion, and amortization .. 10,096 7,071 970 2,055
23 Insurance ... 10,874 7,615 1,045 2,214
24 Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a Postage and Shipping 76,871 59,266 2,969 14,636
b Printing and Publications 62,873 38,602 105 24,166
c Supplies 56,034 50,087 1,705 4,242
d Miscellaneous 37,425 6,632 15,780 15,013
e All other expenses 44,500 39,516 1,572 3,412
25 Total functional expenses. Add lines 1 through 24e 2,670,058 2,174,381 195,998 299,679
26 Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here MediumBullet if following SOP 98-2 (ASC 958-720).        
Form 990 (2018)
Form 990 (2018)
Page 11
Part X
Balance Sheet
Check if Schedule O contains a response or note to any line in this Part IX..............
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash–non-interest-bearing ........ 664,401 1 743,578
2 Savings and temporary cash investments ......... 835,787 2 434,544
3 Pledges and grants receivable, net ......   3 0
4 Accounts receivable, net ............. 88,299 4 90,286
5 Loans and other receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of Schedule L .............
  5 0
6 Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), persons described in section 4958(c)(3)(B), and contributing employers and sponsoring organizations of section 501(c)(9) voluntary employees' beneficiary organizations (see instructions) Complete Part II of Schedule L ..............
  6 0
7 Notes and loans receivable, net ....   7 0
8 Inventories for sale or use ........   8 0
9 Prepaid expenses and deferred charges ......   9 0
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 50,520
b Less: accumulated depreciation 10b 38,973 20,545 10c 11,547
11 Investments—publicly traded securities . 3,540,993 11 3,361,980
12 Investments—other securities. See Part IV, line 11 .....   12 0
13 Investments—program-related. See Part IV, line 11 ..   13 0
14 Intangible assets ...............   14 0
15 Other assets. See Part IV, line 11 ........... 21,773 15 20,526
16 Total assets. Add lines 1 through 15 (must equal line 34)... 5,171,798 16 4,662,461
Liabilities 17 Accounts payable and accrued expenses ..... 98,897 17 115,691
18 Grants payable ... 468,460 18 558,947
19 Deferred revenue .........   19  
20 Tax-exempt bond liabilities .........   20  
21 Escrow or custodial account liability. Complete Part IV of Schedule D 286,796 21 198,578
22 Loans and other payables to current and former officers, directors, trustees, key employees, highest compensated employees, and disqualified
persons. Complete Part II of Schedule L..   22  
23 Secured mortgages and notes payable to unrelated third parties ..   23  
24 Unsecured notes and loans payable to unrelated third parties ..   24  
25 Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24). Complete Part X of Schedule D 99,259 25 114,519
26 Total liabilities. Add lines 17 through 25.. 953,412 26 987,735
Net Assets or Fund Balance Organizations that follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 27 through 29, and lines 33 and 34.
27 Unrestricted net assets 2,555,579 27 1,954,548
28 Temporarily restricted net assets ........... 1,662,807 28 1,720,178
29 Permanently restricted net assets   29  
Organizations that do not follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 30 through 34.
30 Capital stock or trust principal, or current funds .....   30  
31 Paid-in or capital surplus, or land, building or equipment fund ...   31  
32 Retained earnings, endowment, accumulated income, or other funds   32  
33 Total net assets or fund balances ........... 4,218,386 33 3,674,726
34 Total liabilities and net assets/fund balances ........ 5,171,798 34 4,662,461
Form 990 (2018)
Form 990 (2018)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this Part XI..............
1
Total revenue (must equal Part VIII, column (A), line 12) ............
1
2,417,667
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
2,670,058
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
-252,391
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
4,218,386
5
Net unrealized gains (losses) on investments ...............
5
-291,269
6
Donated services and use of facilities .................
6
 
7
Investment expenses .....................
7
 
8
Prior period adjustments .....................
8
 
9
Other changes in net assets or fund balances (explain in Schedule O) ........
9
 
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 33, column (B))
10
3,674,726
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response or note to any line in this Part XII.............
Yes
No
1
Accounting method used to prepare the Form 990:  
If the organization changed its method of accounting from a prior year or checked "Other," explain in
Schedule O.
2a
Were the organization’s financial statements compiled or reviewed by an independent accountant?
2a
 
No
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:
b
Were the organization’s financial statements audited by an independent accountant?
2b
Yes
 
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:
c
If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant?
2c
Yes
 
If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.
3a
As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Single Audit Act and OMB Circular A-133?
3a
 
No
b
If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.
3b
 
 
Form 990 (2018)
Form 990 (2018)
Additional Data


Software ID: 18007218
Software Version: 2018v3.1
Form 990, Special Condition Description:
Special Condition Description
SCHEDULE A
(Form 990 or 990EZ)

Department of the Treasury
Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow Attach to Form 990 or Form 990-EZ.
right arrow Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2018
Open to Public
Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I
Reason for Public Charity Status (All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 12, check only one box.)
1
2
3
4
5
6
7
8
9

10
11
12
a
b
c
d
e
f
Enter the number of supported organizations ...............................  
g
Provide the following information about the supported organization(s).
(i) Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 10 above (see instructions)) (iv) Is the organization listed in your governing document? (v) Amount of monetary support (see instructions) (vi) Amount of other support (see instructions)
Yes No
Total
 
   
For Paperwork Reduction Act Notice, see the Instructions for
Form 990 or 990-EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2018

Schedule A (Form 990 or 990-EZ) 2018
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv), 170(b)(1)(A)(vi), and 170(b)(1)(A)(ix)
(Complete only if you checked the box on line 5, 7, 8, or 9 of Part I or if the organization failed to qualify under Part III. If the organization fails to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2014 (b) 2015 (c) 2016 (d) 2017 (e) 2018 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. 2,342,510 2,018,295 5,109,815 2,369,950 2,396,639 14,237,209
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf....           0
3 The value of services or facilities furnished by a governmental unit to the organization without charge..           0
4 Total. Add lines 1 through 3 2,342,510 2,018,295 5,109,815 2,369,950 2,396,639 14,237,209
5 The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f).. 5,236,287
6 Public support. Subtract line 5 from line 4. 9,000,922
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2014 (b) 2015 (c) 2016 (d) 2017 (e) 2018 (f) Total
7 Amounts from line 4.. 2,342,510 2,018,295 5,109,815 2,369,950 2,396,639 14,237,209
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 649 2,541 2,050 38,668 119,673 163,581
9 Net income from unrelated business activities, whether or not the business is regularly carried on..           0
10 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. 12,716 4,222 13,783 7,574 4,834 43,129
11 Total support. Add lines 7 through 10 14,443,919
12
12
 
13
First five years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here........................................right arrow
Section C. Computation of Public Support Percentage
14
14
62.320 %
15
15
60.840 %
16a
b
17a
b
18
Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow
Schedule A (Form 990 or 990-EZ) 2018

Schedule A (Form 990 or 990-EZ) 2018
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 10 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2014 (b) 2015 (c) 2016 (d) 2017 (e) 2018 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .            
2 Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose            
3 Gross receipts from activities that are not an unrelated trade or business under section 513 .....            
4 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...            
5 The value of services or facilities furnished by a governmental unit to the organization without charge            
6 Total. Add lines 1 through 5            
7a Amounts included on lines 1, 2, and 3 received from disqualified persons            
b Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.            
c Add lines 7a and 7b..            
8 Public support. (Subtract line 7c from line 6.)  
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2014 (b) 2015 (c) 2016 (d) 2017 (e) 2018 (f) Total
9 Amounts from line 6...            
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..            
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.            
11 Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on.            
12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..            
13 Total support. (Add lines 9, 10c, 11, and 12.)..            
14
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2018

Schedule A (Form 990 or 990-EZ) 2018
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 12 of Part I. If you checked 12a of Part I, complete Sections A and B. If you checked 12b of Part I, complete Sections A and C. If you checked 12c of Part I, complete Sections A, D, and E. If you checked 12d of Part I, complete Sections A and D, and complete Part V.)
Section A. All Supporting Organizations
Yes
No
1
Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.
1
 
 
2
Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).
2
 
 
3a
Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer (b) and (c) below.
3a
 
 
b
Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.
3b
 
 
c
Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.
3c
 
 
4a
Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked 12a or 12b in Part I, answer (b) and (c) below.
4a
 
 
b
Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations.
4b
 
 
c
Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.
4c
 
 
5a
Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer (b) and (c) below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed; (ii) the reasons for each such action; (iii) the authority under the organization's organizing document authorizing such action; and (iv) how the action was accomplished (such as by amendment to the organizing document).
5a
 
 
b
Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?
5b
 
 
c
Substitutions only. Was the substitution the result of an event beyond the organization's control?
5c
 
 
6
Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (i) its supported organizations, (ii) individuals that are part of the charitable class benefited by one or more of its supported organizations, or (iii) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.
6
 
 
7
Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in section 4958(c)(3)(C)), a family member of a substantial contributor, or a 35% controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described in line 7? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ).
8
 
 
9a
Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.
9a
 
 
b
Did one or more disqualified persons (as defined in line 9a) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.
9b
 
 
c
Did a disqualified person (as defined in line 9a) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.
9c
 
 
10a
Was the organization subject to the excess business holdings rules of section 4943 because of section 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer line 10b below.
10a
 
 
b
Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).
10b
 
 
Schedule A (Form 990 or 990-EZ) 2018

Schedule A (Form 990 or 990-EZ) 2018
Page 5
Part IV
Supporting Organizations (continued)
Yes
No
11
Has the organization accepted a gift or contribution from any of the following persons?
a
A person who directly or indirectly controls, either alone or together with persons described in (b) and (c) below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described in (a) above?
11b
 
 
c
A 35% controlled entity of a person described in (a) or (b) above? If “Yes” to a, b, or c, provide detail in Part VI.
11c
 
 
Section B. Type I Supporting Organizations
Yes
No
1
Did the directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.
1
 
 
2
Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.
2
 
 
Section C. Type II Supporting Organizations
Yes
No
1
Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).
1
 
 
Section D. All Type III Supporting Organizations
Yes
No
1
Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (i) a written notice describing the type and amount of support provided during the prior tax year, (ii) a copy of the Form 990 that was most recently filed as of the date of notification, and (iii) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?
1
 
 
2
Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).
2
 
 
3
By reason of the relationship described in (2), did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.
3
 
 
Section E. Type III Functionally-Integrated Supporting Organizations
1
Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):
a
b
c
2
Activities Test. Answer (a) and (b) below.
Yes
No
a
Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.
2a
 
 
b
Did the activities described in (a) constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.
2b
 
 
3
Parent of Supported Organizations. Answer (a) and (b) below.
a
Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations? Provide details in Part VI.
3a
 
 
b
Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI. the role played by the organization in this regard.
3b
 
 
Schedule A (Form 990 or 990-EZ) 2018

Schedule A (Form 990 or 990-EZ) 2018
Page 6
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations
1
Section A - Adjusted Net Income (A) Prior Year (B) Current Year
(optional)
1 Net short-term capital gain 1    
2 Recoveries of prior-year distributions 2    
3 Other gross income (see instructions) 3    
4 Add lines 1 through 3 4    
5 Depreciation and depletion 5    
6 Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) 6    
7 Other expenses (see instructions) 7    
8 Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) 8    
Section B - Minimum Asset Amount (A) Prior Year (B) Current Year
(optional)
1 Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): 1
a Average monthly value of securities 1a    
b Average monthly cash balances 1b    
c Fair market value of other non-exempt-use assets 1c    
d Total (add lines 1a, 1b, and 1c) 1d    
e Discount claimed for blockage or other factors
(explain in detail in Part VI):  
2 Acquisition indebtedness applicable to non-exempt use assets 2    
3 Subtract line 2 from line 1d 3    
4 Cash deemed held for exempt use. Enter 1-1/2% of line 3 (for greater amount, see instructions). 4    
5 Net value of non-exempt-use assets (subtract line 4 from line 3) 5    
6 Multiply line 5 by .035 6    
7 Recoveries of prior-year distributions 7    
8 Minimum Asset Amount (add line 7 to line 6) 8    
Section C - Distributable Amount Current Year
1 Adjusted net income for prior year (from Section A, line 8, Column A) 1  
2 Enter 85% of line 1 2  
3 Minimum asset amount for prior year (from Section B, line 8, Column A) 3  
4 Enter greater of line 2 or line 3 4  
5 Income tax imposed in prior year 5  
6 Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) 6  
7
Schedule A (Form 990 or 990-EZ) 2018

Schedule A (Form 990 or 990-EZ) 2018
Page 7
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations (continued)
Section D - Distributions Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity		  
3 Administrative expenses paid to accomplish exempt purposes of supported organizations  
4 Amounts paid to acquire exempt-use assets  
5 Qualified set-aside amounts (prior IRS approval required)  
6 Other distributions (describe in Part VI). See instructions  
7Total annual distributions. Add lines 1 through 6.  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions		  
9 Distributable amount for 2018 from Section C, line 6  
10 Line 8 amount divided by Line 9 amount  
Section E - Distribution Allocations (see instructions) (i)
Excess Distributions 		(ii)
Underdistributions
Pre-2018 		(iii)
Distributable
Amount for 2018
1 Distributable amount for 2018 from Section C, line
6 		 
2 Underdistributions, if any, for years prior to 2018 (reasonable cause required-- explain in Part VI).
See instructions.		  
3 Excess distributions carryover, if any, to 2018:
a From 2013.......  
b From 2014.......  
c From 2015.......  
d From 2016.......  
e From 2017.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2018 distributable amount  
i Carryover from 2013 not applied (see
instructions) 		 
j Remainder. Subtract lines 3g, 3h, and 3i from 3f.  
4Distributions for 2018 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2018 distributable amount  
c Remainder. Subtract lines 4a and 4b from 4.  
5 Remaining underdistributions for years prior to
2018, if any. Subtract lines 3g and 4a from line 2.
If the amount is greater than zero, explain in Part VI.
See instructions.		  
6 Remaining underdistributions for 2018. Subtract
lines 3h and 4b from line 1. If the amount is greater
than zero, explain in Part VI. See instructions.		  
7 Excess distributions carryover to 2019. Add lines
3j and 4c.		  
8 Breakdown of line 7:
a Excess from 2014......  
b Excess from 2015.....  
c Excess from 2016.....  
d Excess from 2017.....  
e Excess from 2018.....  
Schedule A (Form 990 or 990-EZ) (2018)

Schedule A (Form 990 or 990-EZ) 2018
Page 8
Part VI
Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Return Reference Explanation
Schedule A (Form 990 or 990-EZ) 2018


Additional Data


Software ID: 18007218
Software Version: 2018v3.1
Schedule B
(Form 990, 990-EZ,
or 990-PF)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors

Arrow Bullet Attach to Form 990, 990-EZ, or 990-PF.
Arrow Bullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2018
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Organization type (check one):
Filers of:
Section:
Form 990 or 990-EZ






Form 990-PF




Check if your organization is covered by the General Rule or a Special Rule.  
Note. Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.
General Rule
Special Rules
......... Arrow Bullet $  
Caution. An organization that isn't covered by the General Rule and/or the Special Rules doesn't file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its
Form 990-EZ or on its Form 990PF, Part I, line 2, to certify that it doesn't meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).
For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.
Cat. No. 30613XSchedule B (Form 990, 990-EZ, or 990-PF) (2018)
Schedule B (Form 990, 990-EZ, or 990-PF) (2018) Page 2
Name of organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
  		Employer identification number
95-3378526
Part I
Contributors (See instructions). Use duplicate copies of Part I if additional space is needed.
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Total contributions		 (d)
Type of contribution
 
 
 
 

$  


(Complete Part II for noncash contributions.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2018)
Schedule B (Form 990, 990-EZ, or 990-PF) (2018)
Page 3
Name of organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
  		Employer identification number

95-3378526
Part II
Noncash Property (See instructions). Use duplicate copies of Part II if additional space is needed.
(a)
No. from Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
(a)
No. from Part I		 (b)
Description of noncash property given		 (c)
FMV (or estimate)
(See instructions) 		(d)
Date received
 
$    
Schedule B (Form 990, 990-EZ, or 990-PF) (2018)
Schedule B (Form 990, 990-EZ, or 990-PF) (2018)
Page 4
Name of organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
  		Employer identification number

95-3378526
Part III
Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
Use duplicate copies of Part III if additional space is needed.
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No. from Part I		 (b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
Schedule B (Form 990, 990-EZ, or 990-PF) (2018)

Additional Data


Software ID: 18007218
Software Version: 2018v3.1
SCHEDULE C
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service
Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527

SchCMd Bullet Complete if the organization is described below. SchCMd Bullet Attach to Form 990 or Form 990-EZ.
SchCMd BulletGo to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2018
Open to Public
Inspection
If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet Section 501(c)(4), (5), or (6) organizations: Complete Part III.
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I-A
Complete if the organization is exempt under section 501(c) or is a section 527 organization.

1
Provide a description of the organization’s direct and indirect political campaign activities in Part IV (see instructions for definition of “political campaign activities")

2
Political campaign activity expenditures (see instructions) ....................................................................SchCMd Bullet
$  
3
Volunteer hours for political campaign activities (see instructions) ..................................................................
 

Part I-B
Complete if the organization is exempt under section 501(c)(3).
1
Enter the amount of any excise tax incurred by the organization under section 4955 ................................SchCMd Bullet
$  
2
Enter the amount of any excise tax incurred by organization managers under section 4955 .......................SchCMd Bullet
$  
3
If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................
4a
Was a correction made? ......................................................................................................................
b
If "Yes," describe in Part IV.
Part I-C
Complete if the organization is exempt under section 501(c), except section 501(c)(3).
1
Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... SchCMd Bullet
$  
2
Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................SchCMd Bullet

$  
3
Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b...........SchCMd Bullet

$  
4
Did the filing organization file Form 1120-POL for this year? ...................................................................
5
Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.
(a) Name (b) Address (c) EIN (d) Amount paid from filing organization's funds. If none, enter -0-. (e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6
For Paperwork Reduction Act Notice, see the instructions for Form 990 or 990-EZ.
Cat. No. 50084S
Schedule C (Form 990 or 990-EZ) 2018

Schedule C (Form 990 or 990-EZ) 2018
Page 2
Part II-A
Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).
A Check SchCMd Bulletexpenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet
Limits on Lobbying Expenditures
(The term "expenditures" means amounts paid or incurred.) 		(a) Filing
organization's
totals 		(b) Affiliated group totals
1a Total lobbying expenditures to influence public opinion (grass roots lobbying) ......................    
b Total lobbying expenditures to influence a legislative body (direct lobbying) ...............................    
c Total lobbying expenditures (add lines 1a and 1b) ...................................................................    
d Other exempt purpose expenditures ........................................................................    
e Total exempt purpose expenditures (add lines 1c and 1d) ...............................................    
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.		    
If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
Not over $500,00020% of the amount on line 1e.
Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
Over $17,000,000$1,000,000.
g Grassroots nontaxable amount (enter 25% of line 1f) .................................................    
h Subtract line 1g from line 1a. If zero or less, enter -0-. ................................................    
i Subtract line 1f from line 1c. If zero or less, enter -0-. ................................................    
j If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting
section 4911 tax for this year? ...................................................................................................................

4-Year Averaging Period Under section 501(h)
(Some organizations that made a section 501(h) election do not have to complete all of the five
columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
Calendar year (or fiscal year
beginning in) 		(a) 2015 (b) 2016 (c) 2017 (d) 2018 (e) Total
2a Lobbying nontaxable amount          
b Lobbying ceiling amount
(150% of line 2a, column(e)) 		 
c Total lobbying expenditures          
d Grassroots nontaxable amount          
e Grassroots ceiling amount
(150% of line 2d, column (e))		  
f Grassroots lobbying expenditures          
Schedule C (Form 990 or 990-EZ) 2018


Schedule C (Form 990 or 990-EZ) 2018
Page 3
Part II-B
Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).
For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.
(a)
No
Yes
(b)
Amount
1
During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:
a
Volunteers? ...........................................................................................................
Yes
 
b
Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........
Yes
 
c
Media advertisements? ...................................................................................................
 
No
 
d
Mailings to members, legislators, or the public? .............................................................................
Yes
 
 
e
Publications, or published or broadcast statements? ...........................................................
 
No
 
f
Grants to other organizations for lobbying purposes? ..........................................................
 
No
 
g
Direct contact with legislators, their staffs, government officials, or a legislative body? .......................
Yes
 
20,261
h
Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................
 
No
 
i
Other activities? ...................................................................................................................
 
No
 
j
Total. Add lines 1c through 1i ....................................................................................................
20,261
2a
Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....
 
No
b
If "Yes," enter the amount of any tax incurred under section 4912 ...........................................
 
c
If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................
 
d
If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................
 
No
Part III-A
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).
Yes
No
1
Were substantially all (90% or more) dues received nondeductible by members? ...............................................
1
 
 
2
Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................
2
 
 
3
Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................
3
 
 
Part III-B
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."
1
Dues, assessments and similar amounts from members ......................................................................
1
 
2
Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).
a
Current year .............................................................................................................................
2a
 
b
Carryover from last year ............................................................................................................
2b
 
c
Total ...........................................................................................................................................
2c
 
3
Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .
3
 
4
If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................
4
 
5
Taxable amount of lobbying and political expenditures (see instructions) .........................................
5
 
Part IV
Supplemental Information
Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.
Return Reference Explanation
Part II-B, Line 1i - Other Activities Description See schedule O
Schedule C (Form 990 or 990EZ) 2018


Additional Data


Software ID: 18007218
Software Version: 2018v3.1

SCHEDULE D
(Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
SchDMd Bullet Complete if the organization answered "Yes," on Form 990,
Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b.
SchDMd Bullet Attach to Form 990.
SchDMd Bullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2018
Open to Public Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I
Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" on Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year .........    
2 Aggregate value of contributions to (during year)    
3 Aggregate value of grants from (during year)    
4 Aggregate value at end of year ........    
5
Did the organization inform all donors and donor advisors in writing that the assets held in donor advised funds are the organization’s property, subject to the organization’s exclusive legal control? ............
6
Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? ...................................
Part II
Conservation Easements. Complete if the organization answered "Yes" on Form 990, Part IV, line 7.
1
Purpose(s) of conservation easements held by the organization (check all that apply).
2
Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year.
Held at the End of the Year
a Total number of conservation easements ...................... 2a  
b Total acreage restricted by conservation easements .................... 2b  
c Number of conservation easements on a certified historic structure included in (a) ..... 2c  
d Number of conservation easements included in (c) acquired after 7/25/06, and not on a historic structure listed in the National Register ... 2d  
3
Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the
tax year SchDMd Bullet  
4
Number of states where property subject to conservation easement is located SchDMd Bullet  
5
Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ............
6
Staff and volunteer hours devoted to monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet $  
8
Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? .............................
9
In Part XIII, describe how the organization reports conservation easements in its revenue and expense statement, and
balance sheet, and include, if applicable, the text of the footnote to the organization’s financial statements that describes
the organization’s accounting for conservation easements.
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" on Form 990, Part IV, line 8.
1a
If the organization elected, as permitted under SFAS 116 (ASC 958), not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.
b
If the organization elected, as permitted under SFAS 116 (ASC 958), to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:
(i)
Revenue included on Form 990, Part VIII, line 1 .........................SchDMd Bullet $  
(ii)
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
2
If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under SFAS 116 (ASC 958) relating to these items:
a
Revenue included on Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 52283D
Schedule D (Form 990) 2018

Schedule D (Form 990) 2018
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
Using the organization’s acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply):
a
d
b
e
 
c
4
Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.
5
During the year, did the organization solicit or receive donations of art, historical treasures or other similar
assets to be sold to raise funds rather than to be maintained as part of the organization’s collection?...
Part IV
Escrow and Custodial Arrangements. Complete if the organization answered "Yes" on Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21.
1a
Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................
b If "Yes," explain the arrangement in Part XIII and complete the following table: Amount
c Beginning balance ............................. 1c  
d Additions during the year ............................ 1d  
e Distributions during the year .......................... 1e  
f Ending balance ................................ 1f  
2a
Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability? ...
b
If "Yes," explain the arrangement in Part XIII. Check here if the explanation has been provided in Part XIII ....
Part V
Endowment Funds. Complete if the organization answered "Yes" on Form 990, Part IV, line 10.
(a)Current year (b)Prior year (c)Two years back (d)Three years back (e)Four years back
1a Beginning of year balance ....          
b Contributions ...          
c Net investment earnings, gains, and losses          
d Grants or scholarships ...          
e Other expenditures for facilities
and programs ... 		         
f Administrative expenses ....          
g End of year balance ......          
2
Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:
a
Board designated or quasi-endowment SchDMd Bullet  
b
Permanent endowment SchDMd Bullet  
c
Temporarily restricted endowment SchDMd Bullet  
The percentages on lines 2a, 2b, and 2c should equal 100%.
3a
Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes
No
(i) unrelated organizations .................
3a(i)
 
 
(ii) related organizations .................
3a(ii)
 
 
b
If "Yes" on 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
 
 
4
Describe in Part XIII the intended uses of the organization's endowment funds.
Part VI
Land, Buildings, and Equipment.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11a. See Form 990, Part X, line 10.
Description of property (a) Cost or other basis
(investment) 		(b) Cost or other basis (other) (c) Accumulated depreciation (d) Book value
1a Land .....      
b Buildings ....        
c Leasehold improvements        
d Equipment ....   43,363 35,527 7,836
e Other .....   7,157 3,446 3,711
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..SchDMdBullet 11,547
Schedule D (Form 990) 2018

Schedule D (Form 990) 2018
Page 3
Part VII
Investments—Other Securities. Complete if the organization answered "Yes" on Form 990, Part IV, line 11b. See Form 990, Part X, line 12.
(a) Description of security or category
(including name of security)		 (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1) Financial derivatives.........    
(2) Closely-held equity interests........    
(3)Other
(A)
(B)
(C)
(D)
(E)
(F)
(G)
(H)
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)Small Bullet  
Part VIII
Investments—Program Related. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11c. See Form 990, Part X, line 13.
(a) Description of investment (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)Small Bullet  
Part IX
Other Assets. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11d. See Form 990, Part X, line 15.
(a) Description (b) Book value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........Small Bullet  
Part X
Other Liabilities. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11e or 11f. See Form 990, Part X, line 25.
1.(a) Description of liability (b) Book value
(1) Federal income taxes  
Deferred Rent 114,519
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)Small Bullet 114,519
2. Liability for uncertain tax positions. In Part XIII, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under FIN 48 (ASC 740). Check here if the text of the footnote has been provided in Part XIII
Schedule D (Form 990) 2018

Schedule D (Form 990) 2018
Page 4
Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total revenue, gains, and other support per audited financial statements ....... 1 2,197,687
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains (losses) on investments .... 2a -291,269
b Donated services and use of facilities ......... 2b 35,000
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIII.) ............ 2d 57,502
e Add lines 2a through 2d ..................... 2e -198,767
3 Subtract line 2e from line 1.................. 3 2,396,454
4 Amounts included on Form 990, Part VIII, line 12, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b . 4a 21,213
b Other (Describe in Part XIII.) ........... 4b  
c Add lines 4a and 4b.................... 4c 21,213
5 Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5 2,417,667
Part XII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total expenses and losses per audited financial statements ........... 1 2,741,347
2 Amounts included on line 1 but not on Form 990, Part IX, line 25:
a Donated services and use of facilities ......... 2a 35,000
b Prior year adjustments ............ 2b  
c Other losses ................ 2c  
d Other (Describe in Part XIII.) ............ 2d 57,502
e Add lines 2a through 2d.................... 2e 92,502
3 Subtract line 2e from line 1................... 3 2,648,845
4 Amounts included on Form 990, Part IX, line 25, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b .. 4a 21,213
b Other (Describe in Part XIII.) ............ 4b  
c Add lines 4a and 4b..................... 4c 21,213
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5 2,670,058
Part XIII
Supplemental Information
Provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part lV, lines 1b and 2b; Part V, line 4; Part X, line 2; Part XI, lines 2d and 4b; and Part XII, lines 2d and 4b. Also complete this part to provide any additional information.
Return Reference Explanation
Part IV, Line 2b: Explanation of escrow account liability THE FOUNDATION SERVES AS THE ADMINISTRATIVE CENTER FOR THE DYSTONIA COALITION (THE COALITION), A NETWORK OF CLINICAL RESEARCH CENTERS WORKING TO ADVANCE THE UNDERSTANDING OF PRIMARY DYSTONIAS THAT IS SUPPORTED BY THE NATIONAL INSTITUTES OF HEALTH'S (NIH) OFFICE OF RARE DISEASE RESEARCH. IN THIS ROLE, THE FOUNDATION WORKS WITH THE PROJECT'S PRINCIPAL INVESTIGATOR, DR HYDER A JINNAH OF EMORY UNIVERSITY, AND ALL COALITION MAIN CLINICAL PROJECT LEADERS TO SUPPORT THE ACTIVITIES OF THE COALITION, INCLUDING BUT NOT LIMITED TO: MEETING PLANNING; MANAGING PAYMENTS TO CLINICAL SITES PARTICIPATING IN THE COALITION'S MAIN CLINICAL PROJECTS AS WELL AS TO COALITION CONSULTANTS AND RECIPIENTS OF THE COALITION'S CAREER DEVELOPMENT AND PILOT PROJECTS AWARDS; MANAGING PRIVATE FUNDS GIVEN IN SUPPORT OF THE COALITION'S ACTIVITIES OR PROGRAMS; PARTICIPATING IN MONTHLY ADMINISTRATIVE PLANNING MEETINGS; PARTICIPATING IN THE COALITION'S EXECUTIVE COMMITTEE; AND PERFORMING OTHER DUTIES AS REQUESTED BY THE PRINCIPAL INVESTIGATOR AND/OR THE COALITION'S MAIN CLINICAL PROJECT LEADERS OR THE COALITION EXECUTIVE COMMITTEE. TOTAL COALITION PAYMENTS ADMINISTERED WERE $313,968 IN 2018.THE DMRF ALSO SERVES AS THE ADMINISTRATIVE CENTER FOR OTHER DYSTONIA COMMUNITY PROJECTS SUCH AS THE GLOBAL DYSTONIA REGISTRY AND THE DYSTONIA BRAIN COLLECTIVE WHICH ARE SUPPORTED BY THE DMRF AND OTHER DYSTONIA PATIENT ADVOCACY GROUPS. TOTAL RECEIPTS FOR DYSTONIA COMMUNITY PROJECTS WERE $18,000 IN 2018. TOTAL DISBURSEMENTS FOR DYSTONIA COMMUNITY PROJECTS WERE $18,000 IN 2018.
Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 CANADIAN REIMBURSEMENTS $57502
Part XII, Line 2d: Other expenses and losses per audited F/S CANADIAN REIMBURSEMENTS $57502
Schedule D (Form 990) 2018


Additional Data


Software ID: 18007218
Software Version: 2018v3.1




SCHEDULE F(Form 990)
Department of the Treasury
Internal Revenue Service
Statement of Activities Outside the United States
Right pointing arrow large image Complete if the organization answered "Yes" to Form 990, Part IV, line 14b, 15, or 16.Right pointing arrow large image Attach to Form 990.Right pointing arrow large image Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2018
Open to Public Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I
General Information on Activities Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 14b.
1
For grantmakers. Does the organization maintain records to substantiate the amount of its grants and
other assistance, the grantees’ eligibility for the grants or assistance, and the selection criteria used
to award the grants or assistance? . . . . . . . . . . . . . . . . . . . . . . . . .
2
For grantmakers. Describe in Part V the organization’s procedures for monitoring the use of its grants and other assistance outside the United States.
3
Activites per Region. (The following Part I, line 3 table can be duplicated if additional space is needed.)
(a) Region (b) Number of offices in the region (c) Number of employees, agents, and independent contractors in region (d) Activities conducted in region (by type) (e.g., fundraising, program services, investments, grants to recipients located in the region) (e) If activity listed in (d) is a program service, describe specific type of
service(s) in region		 (f) Total expenditures
for and investments
in region
EUROPE 0 0 MEDICAL RESEARCH   173,000
NORTH AMERICA 0 0 TRAVEL REIMBURSEMENT   1,213
EUROPE 0 0 TRAVEL REIMBURSEMENT   3,326
           
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total .....     177,539
b Total from continuation sheets to Part I ...      
c Totals (add lines 3a and 3b)     177,539
For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2018
Schedule F (Form 990) 2018
Page 2
Part II
Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 15, for any recipient who received more than $5,000. Part II can be duplicated if additional space is needed.
1 (a) Name of organization (b) IRS code section
and EIN (if applicable)		 (c) Region (d) Purpose of
grant 		(e) Amount of
cash grant 		(f) Manner of
cash
disbursement 		(g) Amount
of non-cash
assistance 		(h) Description
of non-cash
assistance 		(i) Method of
valuation
(book, FMV,
appraisal, other)
EUROPE MEDICAL RESEARCH 173,000 EFT      
             
             
             
             
             
             
             
             
             
             
             
             
             
             
             
2 Enter total number of recipient organizations listed above that are recognized as charities by the foreign country, recognized as tax-exempt by the IRS, or for which the grantee or counsel has provided a section 501(c)(3) equivalency letter .......MediumBullet
 
3 Enter total number of other organizations or entities .......................MediumBullet
1
Schedule F (Form 990) 2018
Schedule F (Form 990) 2018Page 3
Part III
Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 16.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Region (c) Number of recipients (d) Amount of
cash grant 		(e) Manner of cash
disbursement 		(f) Amount of
non-cash
assistance 		(g) Description
of non-cash
assistance 		(h) Method of
valuation
(book, FMV,
appraisal, other)
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
Schedule F (Form 990) 2018
Schedule F (Form 990) 2018
Page 4
Part IV
Foreign Forms
1 Was the organization a U.S. transferor of property to a foreign corporation during the tax year? If "Yes,"the organization may be required to file Form 926, Return by a U.S. Transferor of Property to a Foreign Corporation (see Instructions for Form 926). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2 Did the organization have an interest in a foreign trust during the tax year? If "Yes," the organization may be required to separately file Form 3520, Annual Return to Report Transactions with Foreign Trusts and Receipt of Certain Foreign Gifts, and/or Form 3520-A, Annual Information Return of Foreign Trust With a U.S. Owner (see Instructions for Forms 3520 and 3520-A; don't file with Form 990). . . . . . . . . . . . . . . . . . . . . . . .
3 Did the organization have an ownership interest in a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 5471, Information Return of U.S. Persons with Respect to Certain Foreign Corporations. (see Instructions for Form 5471). . . . . . . . . . . . . . . . . . . . . . . . . . . .
4 Was the organization a direct or indirect shareholder of a passive foreign investment company or a qualified electing fund during the tax year? If “Yes,” the organization may be required to file Form 8621, Information Return by a Shareholder of a Passive Foreign Investment Company or Qualified Electing Fund. (see Instructions for Form 8621) .
5 Did the organization have an ownership interest in a foreign partnership during the tax year? If "Yes," the organization may be required to file Form 8865, Return of U.S. Persons with Respect to Certain Foreign Partnerships (see Instructions for Form 8865). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
6 Did the organization have any operations in or related to any boycotting countries during the tax year? If "Yes," the organization may be required to separately file Form 5713, International Boycott Report (see Instructions for Form 5713; don't file with Form 990).. . . . . . . . . . . . . . . . . . . . . . . . . . . .
Schedule F (Form 990) 2018
Schedule F (Form 990) 2018
Page 5
Part V
Supplemental Information
Provide the information required by Part I, line 2 (monitoring of funds); Part I, line 3, column (f) (accounting method; amounts of investments vs. expenditures per region); Part II, line 1 (accounting method); Part III (accounting method); and Part III, column (c) (estimated number of recipients), as applicable. Also complete this part to provide any additional information (see instructions).
ReturnReference Explanation
Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US GRANTS AND RESEARCH FELLOWSHIPSGRANTS AND RESEARCH FELLOWSHIPS ARE INVESTIGATOR-INITIATED PROJECTS MONITORED BY THE DMRF'S GRANTS MANAGER AND CHIEF SCIENTIFIC OFFICER/ADVISOR, WITH REGULAR REPORTS PROVIDED TO THE DMRF SCIENCE COMMITTEE. ALL INVESTIGATORS ARE EXPECTED TO PUBLISH ALL MEANINGFUL RESEARCH RESULTS AND FINDINGS IN AN EXPEDITIOUS MANNER AND ARE REQUIRED TO SHARE ANY TOOLS AND MATERIALS DEVELOPED SO THAT OTHER RESEARCHERS CAN BENEFIT FROM THEIR RESEARCH.GRANTS AND RESEARCH FELLOWSHIPS ARE AWARDED FOR ONE OR TWO YEAR TERMS. THE START DATE FOR GRANTS AND RESEARCH FELLOWSHIPS VARIES BY THE DATE OF THE CALL FOR APPLICATIONS, AND EACH APPLICATION'S DATE OF APPROVAL. PER THE GENERAL AWARD TERMS AND CONDITIONS, PAYMENTS ARE MADE TO THE RECIPIENT INSTITUTION IN EQUAL QUARTERLY INSTALLMENTS COMMENCING WITH THE FIRST PAYMENT BEING MADE AT THE TIME OF APPROVAL, UNLESS OTHERWISE REQUESTED BY THE INVESTIGATOR.FOR TWO YEAR AWARDS, RENEWAL FOR THE SECOND YEAR OF FUNDING IS APPROVED AFTER A REVIEW OF THE PROGRESS TO DATE BY THE CHIEF SCIENTIFIC OFFICER/ADVISOR AND SCIENTIFIC DIRECTOR AND APPROVAL BY THE DMRF'S BOARD OF DIRECTORS. IF APPROVED, THE PAYMENT SCHEDULE FOR THE NEXT YEAR REMAINS THE SAME AS THE PRECEDING YEAR.INTERIM PROGRESS REPORTS INCLUDE INFORMATION ON UTILIZATION OF THE FUNDS RECEIVED TO DATE AND PROGRESS WITH REGARD TO THE SPECIFIC AIMS OUTLINED IN THE GRANT APPLICATION. PROGRESS REPORTS ARE DUE AS FOLLOWS:ONE YEAR AWARDS -5 1/2 MONTHS AND 9 MONTHS AFTER RECEIPT OF THE INITIAL DISBURSEMENT.TWO YEAR AWARDS -5 1/2 MONTHS, 9 MONTHS AND 18 MONTHS AFTER RECEIPT OF THE INITIAL DISBURSEMENT.FINAL REPORTS ARE DUE FIVE MONTHS AFTER THE FINAL DISBURSEMENT AND MUST INCLUDE THE FOLLOWING:1)DISCUSSION OF WHETHER THE PROJECT HAS ACHIEVED THE SPECIFIC MILESTONES, AIMS, AND OBJECTIVES OUTLINED IN THE ORIGINAL APPLICATION;2)INFORMATION ON HOW THE FUNDS HAVE BEEN SPENT;3)A PLAN FOR PUBLICATION OF RESULTS AND FINDINGS WITHIN ONE YEAR OF COMPLETING THE PROJECT; AND4)A LIST OF OTHER RESEARCH PROPOSALS EITHER SUBMITTED OR IN PREPARATION THAT HAVE RESULTED FROM THE PROJECT.CLINICAL TRAINING FELLOWSHIPSCLINICAL TRAINING FELLOWSHIPS ARE AWARDED TO SECOND YEAR CLINICAL FELLOWS TO HELP PREPARE THEM FOR A CLINICAL AND/OR RESEARCH CAREER IN MOVEMENT DISORDERS WITH AN EMPHASIS ON DYSTONIA INCLUDING: CLINICAL DIAGNOSIS AND EVALUATION, ONGOING PATIENT CARE AND MANAGEMENT, PHARMACOTHERAPY WITH A SPECIAL EMPHASIS ON NEUROTOXIN THERAPY, AND NEUROSURGICAL INTERVENTIONS, SUCH AS DEEP BRAIN STIMULATION. CLINICAL FELLOWSHIPS ARE AWARDED FOR ONE YEAR STARTING, ON JULY 1. PAYMENTS ARE MADE TO THE RECIPIENT INSTUTUTION IN TWO EQUAL INSTALLMENTS ON OR ABOUT THE 1ST OF JULY AND 1ST OF JANUARY OF THE FOLLOWING YEAR.REPORTS ARE DUE 6 MONTHS AFTER RECEIPT OF THE FIRST DISBURSEMENT AND UPON C0MPLETION OF THE FELLOWSHIP. REPORTS MUST PROVIDE INFORMATION ABOUT THE RECIPIENT'S EXPERIENCE RELATED TO THE GOALS OF THE PROGRAM, INCLUDING THE PERCENTAGE OF TIME SPENT ON DYSTONIA, THE DIFFERENT FORMS OF DYSTONIA THAT THEY WERE EXPOSED TO IN THE CLINIC, AS WELL AS ATTENDANCE AT DYSTONIA-RELATED MEETINGS.CONTRACTSCONTRACTS REPRESENT RESEARCH INITIATED BY THE DMRF AND CONDUCTED FOR SPECIFIC MILESTONE PROJECTS BY SELECTED INVESTIGATORS. CONTRACTS ARE NEGOTIATED AND MONITORED BY THE DMRF'S CHIEF SCIENTIFIC OFFICER AFTER BEING AUTHORIZED BY THE DMRF BOARD OF DIRECTORS. CONTRACT PAYMENTS ARE MADE ACCORDING TO THE PAYMENT SCHEDULE OUTLINED IN THE RESEARCH SERVICES AGREEMENT, WITH THE FIRST DISBURSEMENT IMMEDIATELY UPON EXECUTION OF THE AGREEMENT. SUBSEQUENT CONTRACT PAYMENTS ARE ISSUED AFTER THE RECEIPT OF QUARTERLY MILESTONE REPORTS AND APPROVAL FROM THE DMRF CHIEF SCIENTIFIC OFFICER. MILESTONE REPORTS INCLUDE THE FOLLOWING:1)A SUMMARY OF WORK COMPLETED, INCLUDING A DESCRIPTION OF PROGRESS TOWARD COMPLETION OF RESEARCH MILESTONES;2)DISCLOSURE OF ALL RESULTS OBTAINED SINCE SUBMISSION OF THE PRIOR REPORT AND IDENTIFICATION OF RESULTS THAT MAY BE PATENTABLE OR OTHERWISE PROTECTABLE AS INTELLECTUAL PROPERTY;3)A SUMMARY OF WORK IN PROGRESS AND PLANS FOR THE UPCOMING REPORTING PERIOD;AND4)DISCLOSURE OF ANY NEW APPLICATIONS FOR COPYRIGHT OR PATENT PROTECTION FILED DURING THE REPORTING PERIOD OR INTENDED TO BE FILED IN THE UPCOMING REPORTING PERIOD.A FINAL REPORT IS DUE WITHIN 30-90 DAYS OF THE COMPLETION OF THE PROJECT, DEPENDING ON THE TERMS OF THE RESEARCH SERVICES AGREEMENT, AND INCLUDES A WRITTEN DESCRIPTION OF RESULTS AND AN OUTLINE OF POSSIBLE FUTURE STUDIES.
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
Schedule F (Form 990) 2018
Additional Data


Software ID: 18007218
Software Version: 2018v3.1



SCHEDULE G (Form 990 or 990-EZ)
Department of the Treasury
Internal Revenue Service
Supplemental Information Regarding
Fundraising or Gaming Activities
Complete if the organization answered "Yes" on Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. right arrowAttach to Form 990 or Form 990-EZ.
right arrowGo to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2018
Open to Public Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I
Fundraising Activities. Complete if the organization answered "Yes" on Form 990, Part IV, line 17.
Form 990-EZ filers are not required to complete this part.
1
Indicate whether the organization raised funds through any of the following activities. Check all that apply.
a e
b f
c g
d
2a
Did the organization have a written or oral agreement with any individual (including officers, directors, trustees
or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?
b
If "Yes," list the ten highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.


(i) Name and address of individual
or entity (fundraiser) 		(ii) Activity (iii) Did fundraiser have custody or control of contributions? (iv) Gross receipts
from activity 		(v) Amount paid to
(or retained by)
fundraiser listed in
col. (i) 		(vi) Amount paid to
(or retained by)
organization
Yes No
             
             
             
             
             
             
             
             
             
             
Total . . . . . . . . . . . . . . . . . . . . right arrow      
3
List all states in which the organization is registered or licensed to solicit contributions or has been notified it is exempt from registration or licensing.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 50083H
Schedule G (Form 990 or 990-EZ) 2018
Schedule G (Form 990 or 990-EZ) 2018
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" on Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.




VerticalRevenue
(a) Event #1

ZOO WALKS
(event type) 		(b) Event #2

FACEBOOK
(event type) 		(c) Other events

6
(total number) 		(d) Total events
(add col. (a) through col. (c))

1
Gross receipts . . . . .
346,001
65,360
104,439
515,800

2
Less: Contributions . . . .
290,818
65,360
91,459
447,637
3 Gross income (line 1 minus
line 2) . . . . . .
55,183
 
12,980
68,163



VerticalDirectExpenses
4 Cash prizes . . . . .        
5 Noncash prizes . . . .        
6 Rent/facility costs . . . .        
7 Food and beverages . . .        
8 Entertainment . . . .        
9 Other direct expenses . . . 55,183   12,980 68,163
10 Direct expense summary. Add lines 4 through 9 in column (d) . . . . . . . . . . right arrow 68,163
11 Net income summary. Subtract line 10 from line 3, column (d). . . . . . . . . . right arrow  
Part III
Gaming. Complete if the organization answered "Yes" on Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.
VerticalRevenue
(a) Bingo (b) Pull tabs/Instant
bingo/progressive bingo 		(c) Other gaming (d) Total gaming (add col.(a) through col.(c))

1
Gross revenue . . . . .
 
 
 
 
VerticalDirectExpenses

2
Cash prizes . . . . .
 
 
 
 

3
Noncash prizes . . . .
 
 
 
 

4
Rent/facility costs . . . .
 
 
 
 

5
Other direct expenses . . .
 
 
 
 


6

Volunteer labor . . . .
%
%
%


7
Direct expense summary. Add lines 2 through 5 in column (d) . . . . . . . . . . right arrow
 

8
Net gaming income summary. Subtract line 7 from line 1, column (d). . . . . . . . . right arrow
 

9
Enter the state(s) in which the organization conducts gaming activities:
a
Is the organization licensed to conduct gaming activities in each of these states? . . . . . . . .
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? . . .
b
If "Yes," explain:
 
Schedule G (Form 990 or 990-EZ) 2018
Schedule G (Form 990 or 990-EZ) 2018
Page 3
11
Does the organization conduct gaming activities with nonmembers? . . . . . . . . . . .
12
Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity
formed to administer charitable gaming? . . . . . . . . . . . . . . . . .
13
Indicate the percentage of gaming activity conducted in:
a
The organization's facility . . . . . . . . . . . . . . . . . .
13a
%
b
An outside facility . . . . . . . . . . . . . . . . . . . .
13b
%
14
Enter the name and address of the person who prepares the organization's gaming/special events books and records:
Name right arrow
Address right arrow
15a
Does the organization have a contract with a third party from whom the organization receives gaming
revenue? . . . . . . . . . . . . . . . . . . . . . . . .
b
If "Yes," enter the amount of gaming revenue received by the organization right arrow $   and the
amount of gaming revenue retained by the third party right arrow $   .
c
If "Yes," enter name and address of the third party:
Name right arrow
Address right arrow
 
 
16
Gaming manager information:
Name right arrow
Gaming manager compensation right arrow $  
Description of services provided right arrow
 
17
Mandatory distributions:
a
Is the organization required under state law to make charitable distributions from the gaming proceeds to
retain the state gaming license? . . . . . . . . . . . . . . . . . . .
b
Enter the amount of distributions required under state law distributed to other exempt organizations or spent
in the organization's own exempt activities during the tax year right arrow$  
Part IV
Supplemental Information. Provide the explanations required by Part I, line 2b, columns (iii) and (v); and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also provide any additional information. See instructions.
Return Reference Explanation
Schedule G (Form 990 or 990-EZ) 2018
Additional Data


Software ID: 18007218
Software Version: 2018v3.1

Note: To capture the full content of this document, please select landscape mode (11" x 8.5") when printing.

Schedule I
(Form 990)
Department of the Treasury
Internal Revenue Service
Grants and Other Assistance to Organizations,
Governments and Individuals in the United States
Complete if the organization answered "Yes," on Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990.
lBullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2018
Open to Public
Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number
95-3378526
Part I
General Information on Grants and Assistance
1
Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and
the selection criteria used to award the grants or assistance? ........................
2
Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States.
Part II
Grants and Other Assistance to Domestic Organizations and Domestic Governments. Complete if the organization answered "Yes" on Form 990, Part IV, line 21, for any recipient
that received more than $5,000. Part II can be duplicated if additional space is needed.
(a) Name and address of organization
or government		 (b) EIN (c) IRC section
(if applicable)		 (d) Amount of cash grant (e) Amount of non-cash
assistance		 (f) Method of valuation
(book, FMV, appraisal,
other)		 (g) Description of
noncash assistance		 (h) Purpose of grant
or assistance
(1) Cleveland VA Med Res & Educ F
10701 East Blvd 151c
Cleveland,OH44106 		34-1710663   65,000 0     medical research
(2) Cornell University
PO Box 22
Ithaca,NY14851 		15-0532082   50,000 0     medical research
(3) Duke University Medical Ctr
324 Blackwell
Durham,NC27701 		56-0532129   130,000 0     medical research
(4) Emory University
1599 Clifton Road NE 3rd Fl
Atlanta,GA30322 		58-0566256   65,000 0     medical research
(5) Feinstein Inst for Med Res
PO Box 95000-7530
Philadelphia,PA19195 		11-2673595   65,000 0     medical research
(6) Icahn Schl of Med at Mt Sinai
One Gustave L Levy Place
New York,NY10029 		13-6171197   50,000 0     medical research
(7) Mass General Hospital
55 Fruit St
Boston,MA02114 		04-2697983   50,000 0     medical research
(8) Regents of the Univ of Minn
2221 University Ave SE 111
Minneapolis,MN55414 		41-6007513   50,000 0     medical research
(9) University of California SF
855 Folsom Street Box 0812
San Francisco,CA94143 		94-6036493   65,000 0     medical research
(10) Yale University
PO Box 208239
New Haven,CT06520 		06-0646973   107,498 0     medical research
2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
10
3
Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image
0
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2018

Schedule I (Form 990) 2018
Page 2
Part III
Grants and Other Assistance to Domestic Individuals. Complete if the organization answered "Yes" on Form 990, Part IV, line 22.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Number of
recipients		 (c) Amount of
cash grant		 (d) Amount of
noncash assistance		 (e) Method of valuation (book,
FMV, appraisal, other)		 (f) Description of noncash assistance
(1)
(2)
(3)
(4)
(5)
(6)
(7)
Part IV
Supplemental Information. Provide the information required in Part I, line 2; Part III, column (b); and any other additional information.
Return Reference Explanation
Grantmaker's Description of How Grants are Used DOMESTIC GRANTS AND FELLOWSHIPS ARE MONITORED FOLLOWING THE SAME PROCEDURES AS DESCRIBED IN SCHEDULE F, PART 1, LINE 2 FOR GRANTS FUNDED OUTSIDE THE US.
Schedule I (Form 990) 2018



Additional Data


Software ID: 18007218
Software Version: 2018v3.1


Schedule J
(Form 990)
Department of the Treasury
Internal Revenue Service
Compensation Information
For certain Officers, Directors, Trustees, Key Employees, and Highest
Compensated Employees
SchJMediumBullet Complete if the organization answered "Yes" on Form 990, Part IV, line 23.
SchJMediumBullet Attach to Form 990.
SchJMediumBullet Go to www.irs.gov/Form990 for instructions and the latest information.
OMB No. 1545-0047
2018
Open to Public Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I
Questions Regarding Compensation
Yes
No
1a
Check the appropiate box(es) if the organization provided any of the following to or for a person listed on Form
990, Part VII, Section A, line 1a. Complete Part III to provide any relevant information regarding these items.
b
If any of the boxes in line 1a are checked, did the organization follow a written policy regarding payment or reimbursement or provision of all of the expenses described above? If "No," complete Part III to explain .........
1b
 
 
2
Did the organization require substantiation prior to reimbursing or allowing expenses incurred by all
directors, trustees, officers, including the CEO/Executive Director, regarding the items checked in line 1a? ..
2
 
 
3
Indicate which, if any, of the following the filing organization used to establish the compensation of the
organization's CEO/Executive Director. Check all that apply. Do not check any boxes for methods
used by a related organization to establish compensation of the CEO/Executive Director, but explain in Part III.
4
During the year, did any person listed on Form 990, Part VII, Section A, line 1a, with respect to the filing organization or a related organization:
a
Receive a severance payment or change-of-control payment? .............
4a
 
No
b
Participate in, or receive payment from, a supplemental nonqualified retirement plan? .........
4b
 
No
c
Participate in, or receive payment from, an equity-based compensation arrangement? .........
4c
 
No
If "Yes" to any of lines 4a-c, list the persons and provide the applicable amounts for each item in Part III.
Only 501(c)(3), 501(c)(4), and 501(c)(29) organizations must complete lines 5-9.
5
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the revenues of:
a
The organization? ....................
5a
 
No
b
Any related organization? .......................
5b
 
No
If "Yes," on line 5a or 5b, describe in Part III.
6
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the net earnings of:
a
The organization? ..................
6a
 
No
b
Any related organization? ......................
6b
 
No
If "Yes," on line 6a or 6b, describe in Part III.
7
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization provide any nonfixed
payments not described in lines 5 and 6? If "Yes," describe in Part III ............
7
 
No
8
Were any amounts reported on Form 990, Part VII, paid or accured pursuant to a contract that was
subject to the initial contract exception described in Regulations section 53.4958-4(a)(3)? If "Yes," describe
in Part III ..........................
8
 
No
9
If "Yes" on line 8, did the organization also follow the rebuttable presumption procedure described in Regulations section 53.4958-6(c)? .........................
9
 
No
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50053T
Schedule J (Form 990) 2018

Schedule J (Form 990) 2018
Page 2
Part II
Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use duplicate copies if additional space is needed.
For each individual whose compensation must be reported on Schedule J, report compensation from the organization on row (i) and from related organizations, described in the
instructions, on row (ii). Do not list any individuals that are not listed on Form 990, Part VII.
Note. The sum of columns (B)(i)-(iii) for each listed individual must equal the total amount of Form 990, Part VII, Section A, line 1a, applicable column (D) and (E) amounts for that individual.
(A) Name and Title (B) Breakdown of W-2 and/or 1099-MISC compensation (C) Retirement and other deferred compensation (D) Nontaxable
benefits		 (E) Total of columns
(B)(i)-(D) 		(F) Compensation in column (B) reported as deferred on prior Form 990
(i) Base
compensation 		(ii) Bonus & incentive
compensation 		(iii) Other reportable compensation
1JAN TELLER
CHIEF SCI OFFC/ADV 		(i)

(ii)		 136,738
-------------
  		 
-------------
  		 
-------------
  		4,751
-------------
  		17,153
-------------
  		158,642
-------------
  		 
-------------
 
2JANET HIESHETTER
Sec/EXEC DIR 		(i)

(ii)		 153,494
-------------
  		3,000
-------------
  		 
-------------
  		6,903
-------------
  		33,418
-------------
  		196,815
-------------
  		 
-------------
 
Schedule J (Form 990) 2018

Schedule J (Form 990) 2018
Page 3
Part III
Supplemental Information
Provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 3, 4a, 4b, 4c, 5a, 5b, 6a, 6b, 7, and 8, and for Part II. Also complete this part for any additional information.
Return Reference Explanation
Schedule J (Form 990) 2018
Additional Data


Software ID: 18007218
Software Version: 2018v3.1
SCHEDULE M
(Form 990)

Department of the Treasury
Internal Revenue Service
Noncash Contributions
Right pointing arrow large imageComplete if the organizations answered "Yes" on Form 990, Part IV, lines 29 or 30.
Right pointing arrow large image Attach to Form 990.
Right pointing arrow large imageGo to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2018
Open to Public Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Part I
Types of Property
(a)
Check if applicable 		(b)
Number of contributions or items contributed 		(c)
Noncash contribution amounts reported on
Form 990, Part VIII, line 1g 		(d)
Method of determining
noncash contribution amounts
1 Art—Works of art ....        
2 Art—Historical treasures .        
3 Art—Fractional interests ..        
4 Books and publications ..      
5 Clothing and household
goods ....... 		     
6 Cars and other vehicles ..        
7 Boats and planes ....        
8 Intellectual property ...        
9 Securities—Publicly traded . X 2 146,364  
10 Securities—Closely held stock .        
11 Securities—Partnership, LLC,
or trust interests .... 		       
12 Securities—Miscellaneous ..        
13 Qualified conservation
contribution—Historic
structures ..... 		       
14 Qualified conservation
contribution—Other ... 		       
15 Real estate—Residential .        
16 Real estate—Commercial ..        
17 Real estate—Other ...        
18 Collectibles .....        
19 Food inventory ...        
20 Drugs and medical supplies .        
21 Taxidermy ......        
22 Historical artifacts ....        
23 Scientific specimens ..        
24 Archeological artifacts ...        
25 Other Right pointing arrow large image ( )
26 Other Right pointing arrow large image ( )
27 Other Right pointing arrow large image ( )
28 Other Right pointing arrow large image ( )
29
Number of Forms 8283 received by the organization during the tax year for contributions
for which the organization completed Form 8283, Part IV, Donee Acknowledgement
29
 
Yes
No
30a
During the year, did the organization receive by contribution any property reported in Part I, lines 1 through 28, that it must hold for at least three years from the date of the initial contribution, and which is not required to be used for exempt purposes for the entire holding period? ...................
30a
 
No
b
If "Yes," describe the arrangement in Part II.
31
Does the organization have a gift acceptance policy that requires the review of any nonstandard contributions?
31
 
No
32a
Does the organization hire or use third parties or related organizations to solicit, process, or sell noncash
contributions? ..........................
32a
 
No
b
If "Yes," describe in Part II.
33
If the organization did not report an amount in column (c) for a type of property for which column (a) is checked,
describe in Part II.
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 51227J
Schedule M (Form 990) (2018)
Schedule M (Form 990) (2018)
Page 2
Part II
Supplemental Information. Provide the information required by Part I, lines 30b, 32b, and 33, and whether the organization is reporting in Part I, column (b), the number of contributions, the number of items received, or a combination of both. Also complete this part for any additional information.
Return Reference Explanation
Schedule M (Form 990) (2018)

Additional Data


Software ID: 18007218
Software Version: 2018v3.1
SCHEDULE O
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service
Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
MediumBullet Attach to Form 990 or 990-EZ.
MediumBullet Go to www.irs.gov/Form990 for the latest information.
OMB No. 1545-0047
2018
Open to Public
Inspection
Name of the organization
DYSTONIA MEDICAL RESEARCH FOUNDATION
 
Employer identification number

95-3378526
Return Reference Explanation
Form 990, Part III, Line 4d: Other Program Services Description OTHER PROGRAM SERVICES 4: ADVOCACY-THE DMRF PROVIDES THE STAFF AND ADMINISTRATIVE SUPPORT FOR THE DYSTONIA ADVOCACY NETWORK, A COLLABORATION OF FOUR DYSTONIA ORGANIZATIONS WORKING TO MEET THE POLICY NEEDS OF THE DYSTONIA COMMUNITY. FOR THE PAST TWELVE YEARS, THE DYSTONIA ADVOCACY NETWORK HAS BEEN INSTRUMENTAL IN EDUCATING CONGRESS ABOUT THE BENEFITS OF LISTING DYSTONIA AS A CONDITION ELIGIBLE FOR STUDY ON THE DEPARTMENT OF DEFENSE (DOD) PEER-REVIEWED MEDICAL RESEARCH PROGRAM, THUS MAKING THE CONDITION ELIGIBLE FOR INVESTIGATORS TO COMPETE FOR RESEARCH FUNDING. ON BEHALF OF THE FIVE DYSTONIA ADVOCACY NETWORK ORGANIZATIONS, THE DMRF ENGAGES A LEGISLATIVE CONSULTANT TO TRACK LEGISLATIVE ACTIVITIES ON CAPITOL HILL, MAINTAINS AN ADVOCACY WEBSITE, AND ELECTRONICALLY DISSEMINATES ACTION ALERTS TO STAY CONNECTED WITH KEY LEGISLATORS. THE DMRF ALSO SUPPORTS A NATIONWIDE NETWORK OF VOLUNTEER ADVOCATES WHO CONTINUALLY WORK TO EDUCATE MEMBERS OF CONGRESS ABOUT DYSTONIA AND ADVANCE THE COMMUNITY'S LEGISLATIVE AGENDA. VOLUNTEERS MEET WITH POLICYMAKERS DURING THE ANNUAL DYSTONIA ADVOCACY DAY AND AS NEEDED THROUGHOUT THE YEAR TO ADVOCATE ON BEHALF OF THE DYSTONIA COMMUNITY ON ISSUES SUCH AS INCREASED RESEARCH FUNDING FOR THE NATIONAL INSTITUTES OF HEALTH, ACCESS TO HEALTHCARE, AND APPROPRIATE, AFFORDABLE REIMBURSEMENT FOR DYSTONIA TREATMENTS.
Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et SAMUEL BELZBERG (DECEASED APRIL 2018) WAS THE SPOUSE OF FRANCES BELZBERGFRANCES BELZBERG WAS THE SPOUSE OF THE DECEASED SAMUEL BELZBERGART KESSLER IS THE SON OF DENNIS AND BARBARA KESSLERDENNIS KESSLER IS THE SPOUSE OF BARBARA KESSLER AND FATHER OF ART KESSLERBARBARA KESSLER IS THE SPOUSE OF DENNIS KESSLER AND MOTHER OF ART KESSLERROSALIE LEWIS IS THE SPOUSE OF RICHARD LEWISRICHARD LEWIS IS THE SPOUSE OF ROSALIE LEWISMARK RUDOLPH IS THE SPOUSE OF DIANE RUDOLPHDIANE RUDOLPH IS THE SPOUSE OF MARK RUDOLPHERWIN JACKSON IS THE SPOUSE OF STEPHANIE JACKSONSTEPHANIE JACKSON IS THE SPOUSE OF ERWIN JACKSONLIZ RAWSON IS THE DAUGHTER OF CAROL RAWSONCAROL RAWSON IS THE MOTHER OF LIZ RAWSON
Form 990, Part VI, Line 11b: Form 990 Review Process THE BOARD OF DIRECTORS HAS DELEGATED THE REVIEW OF THE FORM 990 TO THE TAX REVIEW TASK FORCE WHICH IS COMPRISED OF THE PRESIDENT, TREASURER AND TWO OTHER MEMBERS OF THE BOARD OF DIRECTORS. PRIOR TO THE SIGNING AND FILING OF THE FORM 990, MANAGEMENT, OUTSIDE CPA, THE TAX REVIEW TASK FORCE AND THE INDEPENDENT ACCOUNTANT WHO PREPARES THE FORM 990 MEET TO REVIEW THE ENTIRE FORM. UPON APPROVAL BY THE TAX REVIEW TASK FORCE, THE FORM 990 IS MADE AVAILABLE TO ALL MEMBERS OF THE BOARD OF DIRECTORS FOR REVIEW, AFTER WHICH IT IS SIGNED BY THE TREASURER AND IS FILED.
Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts ON AN ANNUAL BASIS, DMRF REQUESTS WRITTEN STATEMENT OF ANY CONFLICTS FROM MEMBERS OF THE BOARD. THE BOARD PRESIDENT, ALONG WITH THE EXECUTIVE DIRECTOR, MONITOR AND REPORT POTENTIAL CONFLICTS TO CHAIR OF AUDIT COMMITTEE. ANY CONFLICTS THAT ARE DETERMINED TO EXIST ARE REPORTED TO THE BOARD.
Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management ANNUALLY, THE DMRF BOARD PRESIDENT CONSULTS WITH THE BOARD OF DIRECTORS REGARDING THE PERFORMANCE OF THE EXECUTIVE DIRECTOR AND PREPARES A WRITTEN PERFORMANCE EVALUATION. THE BOARD PRESIDENT, AFTER CONSULTATION WITH THE BOARD, DETERMINES SALARY ACTION, IF ANY, AND MEETS WITH THE EXECUTIVE DIRECTOR TO DISCUSS THE PERFORMANCE EVALUATION. COMPARATIVE SALARY INFORMATION IS OBTAINED ABOUT ORGANIZATIONS OF SIMILAR SCOPE AND SIZE THROUGH INFORMATION FROM THE ASSOCIATION FORUM OF CHICAGOLAND AND THROUGH OTHER PUBLICLY AVAILABLE DOCUMENTS.
Form 990, Part VI, Line 19: Other Organization Documents Publicly Available FORM 990, AUDITED FINANCIAL STATEMENTS, THE ANNUAL REPORT, AND THE BOARD APPROVED ANNUAL OPERATING PLAN ARE AVAILABLE ON THE FOUNDATION'S WEBSITE. CONFLICT OF INTEREST, GOVERNING DOCUMENTS AND POLICIES ARE AVAILABLE UPON REQUEST.
FORM 990, PART V, LINE 2A-EMPLOYEES THE NUMBER OF EMPLOYEES REPORTED ON FORM W-3 FOR 2018 WAS 12 WHICH TRANSLATES INTO 10 FULL TIME EQUIVALENTS.
FORM 990, PART VII, SECTION A-COMPENSATION THE EXECUTIVE DIRECTOR IS OFFERED THE SAME BENEFIT PACKAGE AS ALL OTHER EMPLOYEES. CONSISTENT WITH PRIOR YEARS, THE EMPLOYEE BENEFITS OFFERED INCLUDE HEALTH INSURANCE, LONG-TERM DISABILITY INSURANCE, LIFE INSURANCE, AND 401(K) EMPLOYER MATCHING. IN ADDITION, THE FOUNDATION UNDERWRITES A MODEST DENTAL BENEFIT PLAN IN WHICH THEY REIMBURSE EMPLOYEES FOR DENTAL EXPENSES UP TO A CERTAIN AMOUNT. THE COST OF PROVIDING EMPLOYEE HEALTH INSURANCE CONTINUES TO BE THE PREDOMINANT EXPENSE IN THE EMPLOYEE BENEFIT PACKAGE. THE EXECUTIVE DIRECTOR'S OTHER COMPENSATION OF $40,321 INCLUDES $16,088 OF PRETAX CONTRIBUTIONS FOR HEALTH AND PARKING BENEFITS PAID BY THE EXECUTIVE DIRECTOR.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2018


Additional Data


Software ID: 18007218
Software Version: 2018v3.1