Form990
Department of the Treasury
Internal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except black lung benefit trust or private foundation)

MediumBullet The organization may have to use a copy of this return to satisfy state reporting requirements.
OMB No. 1545-0047
2011
Open to Public Inspection
A For the calendar year, or tax year beginning 01-01-2011 and ending 12-31-2011
BCheck if applicable:
CName of organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Doing Business As
 
 
Number and street (or P.O. box if mail is not delivered to street address)
P O BOX 926
 
Room/suite
City or town, state or country, and ZIP + 4
WADSWORTH, OH44282
D Employer identification number

27-0950477
E Telephone number

G Gross receipts $ 342,003
F Name and address of principal officer:
KAREN UTLEY
325 BRAZOSWOOD
CLUTE,TX77531
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
www.cdkl5.com
H(a)
Is this a group return for
affiliates?
H(b)
Are all affiliates included?
If "No," attach a list. (see instructions)
H(c)
Group exemption number MediumBullet  
K Form of organization:
 
L Year of formation: 2009
M State of legal domicile: OH
Part I
Summary
Activities & Governance 1 Briefly describe the organization’s mission or most significant activities: To fund research aimed at finding a cure for CDKL5, a rare genetic disorder.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a)..... 3 7
4 Number of independent voting members of the governing body (Part VI, line 1b) .... 4 7
5 Total number of individuals employed in calendar year 2011 (Part V, line 2a) ... 5 0
6 Total number of volunteers (estimate if necessary) .... 6 11
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) .........   325,877
9 Program service revenue (Part VIII, line 2g) .........   0
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) ....   1,248
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e)   0
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)...................   327,125
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )...   100,500
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)   0
16a Professional fundraising fees (Part IX, column (A), line 11e).....   0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet753    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24f)....   6,416
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25)   106,916
19 Revenue less expenses. Subtract line 18 from line 12.......   220,209
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 142,496 363,636
21 Total liabilities (Part X, line 26).............   0
22 Net assets or fund balances. Subtract line 21 from line 20..... 142,496 363,636
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 Right pointing arrowhead image

Firm's EIN Right pointing arrowhead image
Firm's address Right pointing arrowhead image



Phone no.
May the IRS discuss this return with the preparer shown above? See instructions .........bullet
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y
Form 990 (2011)
Form 990 (2011)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response to any question in this Part III .........
1
Briefly describe the organization’s mission: To fund research aimed at finding
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 and section 4947(a)(1) trusts 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 $ 103,926 including grants of $ 100,500 ) (Revenue $   )
A NUMBER OF FUNDRAISERS WERE HELD IN 2011. IN ADDITION, CONTRIBUTIONS WERE RECEIVED FROM NUMEROUS INDIVIDUALS, CORPORATIONS, AND FOUNDATIONS. AS A RESULT, GRANTS TOTALING $100,500 WERE MADE DURING 2011 TO FUND RESEARCH THAT WILL LEAD TO A CURE FOR THIS VERY DEBILITATING DISEASE IN THE NEAR FUTURE. THE ORGANIZATION'S GOALS INCLUDE AGGRESSIVE RESEARCH, STUDIES TO IMPROVE THE QUALITY OF LIFE FOR CHILDREN WITH CDKL5, AND TESTING OF COMPOUNDS TO IDENTIFY NEUROLOGIC MODIFIERS.
4b (Code:   ) (Expenses $   including grants of $   ) (Revenue $   )
4c (Code:   ) (Expenses $   including grants of $   ) (Revenue $   )
4d Other program services (Describe in Schedule O.)
(Expenses $   including grants of $   ) (Revenue $   )
4e Total program service expensesMediumBullet$ 103,926
Form 990 (2011)
Form 990 (2011)
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? 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 I..........
3
 
No
4
Section 501(c)(3) organizations. Did the organization engage in lobbying activities? If “Yes,” complete Schedule C,
Part II.........................
4
 
No
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 III........................
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 I....................
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 II...
7
 
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets? If “Yes,” complete Schedule D, Part III ....................
8
 
No
9
Did the organization report an amount in Part X, line 21; 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 IV...................
9
 
No
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 V
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, line10? If “Yes,” complete Schedule D, Part VI.
11a
 
No
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 VII.
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 VIII.
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 IX.
11d
 
No
e
Did the organization report an amount for other liabilities in Part X, line 25? If “Yes,” complete Schedule D, Part X.
11e
 
No
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 X.
11f
 
No
12a
Did the organization obtain separate, independent audited financial statements for the tax year?
If “Yes,” complete Schedule D, Parts XI, XII, and XIII 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, XII, and XIII is optional
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, Part I.........
14b
 
No
15
Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or assistance to any organization or entity located outside the U.S.? If “Yes,” complete Schedule F, Part II..
15
 
No
16
Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or assistance to individuals located outside the U.S.? If “Yes,” complete Schedule F, Part III..
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
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...................
19
 
No
20a
Did the organization operate one or more hospitals? If “Yes,” complete Schedule H.....
20a
 
No
b
If “Yes” to line 20a, did the organization attach a copy of its audited financial statement to this return? Note. All Form 990 filers that operated one or more hospitals must attach audited financial statements.
20b
 
 
Form 990 (2011)
Form 990 (2011)
Page 4
Part IV
Checklist of Required Schedules (continued)
21
Did the organization report more than $5,000 of grants and other assistance to any government or organization in the United States 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 and other assistance to individuals in the United States on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III.....
22
 
No
23
Did the organization answer “Yes” to Part VII, Section A, questions 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................
23
 
No
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 questions 24b–24d and complete Schedule K. If “No,” go to line 25................
24a
 
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...
24b
 
 
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
 
 
d
Did the organization act as an “on behalf of” issuer for bonds outstanding at any time during the year?...
24d
 
 
25a
Section 501(c)(3) and 501(c)(4) 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
Was a loan to or by a current or former officer, director, trustee, key employee, highly compensated employee, or disqualified person outstanding as of the end of the organization’s tax year? 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 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
29
 
No
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If “Yes,” complete Schedule M............
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, Parts II, III, IV, and 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
 
No
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
 
 
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 11 and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Form 990 (2011)
Form 990 (2011)
Page 5
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response to any question in this Part V .........
Yes
No
1a
Enter the number reported in Box 3 of Form 1096. Enter -0- if not applicable. .......
1a
0
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
 
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
0
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
 
 
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,” provide an explanation in Schedule O.....
3b
 
 
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 or securities account)?.......................
4a
 
No
b
If "Yes," enter the name of the foreign country: MediumBullet
See instructions for filing requirements for Form TD F 90-22.1, Report of Foreign Bank and Financial Accounts.
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?..........
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
Yes
 
b
If “Yes,” did the organization notify the donor of the value of the goods or services provided?.....
7b
Yes
 
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
 
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
 
 
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C?...............
7h
 
 
8
Sponsoring organizations maintaining donor advised funds and section 509(a)(3) supporting organizations. Did the supporting organization, or a donor advised fund maintained by a sponsoring organization, have excess business holdings at any time during the year?................
8
 
 
9
Sponsoring organizations maintaining donor advised funds.
a
Did the organization make any taxable distributions under section 4966?.........
9a
 
 
b
Did the organization make a distribution to a donor, donor advisor, or related person?......
9b
 
 
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
 
 
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. All 501(c)(29) organizations must list in Schedule O each state in which they are licensed to issue qualified health plans, the amount of reserves required by each state, and the amount of reserves the organization allocated to each state.
13a
 
 
b
Enter the aggregate 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 aggregate amount of reserves on hand.
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
 
b
If "Yes," has it filed a Form 720 to report these payments? If “No,” provide an explanation in Schedule O..
14b
 
 
Form 990 (2011)
Form 990 (2011)
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 to any question 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
If the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
1a
7
b
Enter the number of voting members included in line 1a, above, who are independent .................
1b
7
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
 
No
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
Yes
 
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
Yes
 
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
 
No
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
 
 
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 the 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
 
No
14
Did the organization have a written document retention and destruction policy? .........
14
 
No
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
 
No
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
CT , MI , OH
18
Section 6104 requires an organization to make its Form 1023 (or 1024 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, physical address, and telephone number of the person who possesses the books and records of the organization: MediumBullet
KAREN UTLEY
BOX 984325 BRAZOSWOOD
CLUTE,TX77531
(979) 265-3411
Form 990 (2011)
Form 990 (2011)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response to any question 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, and current key employees. 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 organizations compensated any current or former officer, director, or trustee.
(A)
Name and Title 		(B)
Average hours per week (describe hours for related organizations in Schedule O) 		(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; Officer; Key Employee; Highest compensated employee; Former;
(1) KATHERYN ELIBRI FRAME
President
 35.00 X   X       0 0 0
(2) MELISSA RALSTON
Secretary
 15.00 X   X       0 0 0
(3) KAREN UTLEY
Treasurer
 18.00 X   X       0 0 0
(4) KELLY BARNES
Director
 7.00 X           0 0 0
(5) KRISTIN LEOPOLDINO
Director
 1.00 X           0 0 0
(6) KIM NOTHDURFT
Director
 1.00 X           0 0 0
(7) CAROL-ANNE PARTRIDGE
Director
 1.00 X           0 0 0




















Form 990 (2011)
Form 990 (2011)
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 (describe hours for related organizations in Schedule O) 		(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; Officer; Key Employee; Highest compensated employee; Former;


























1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)............MediumBullet      
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organizationMediumBullet0
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
 
No
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 $100,000 of compensation from the organization MediumBullet0
Form 990 (2011)
Form 990 (2011)
Page 9
Part VIII
Statement of Revenue
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512, 513, or 514
Contributions, Gifts, Grants and Other Similar Amounts 1a Federated campaigns..1a 273,255
b Membership dues....1b 860
c Fundraising events....1c 51,762
d Related organizations...1d  
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and
similar amounts not included above1f 		 
g Noncash contributions included in lines 1a-1f:$  
h Total. Add lines 1a-1f.......MediumBullet 325,877
Program Service Revenue Business Code
2a
b
c
d
e
f All other program service revenue .        
g Total. Add lines 2a–2f........MediumBullet  
Other Revenue 3 Investment income (including dividends, interest
and other similar amounts).....MediumBullet 1,650     1,650
4 Income from investment of tax-exempt bond proceeds..MediumBullet        
5 Royalties............MediumBullet        
(i) Real (ii) Personal
6a Gross rents    
b Less: rental expenses    
c Rental income or (loss)    
d Net rental income or (loss).......MediumBullet        
(i) Securities (ii) Other
7a Gross amount from sales of assets other than inventory   5,467
b Less: cost or other basis and sales expenses   5,869
c Gain or (loss)   -402
d Net gain or (loss)..........MediumBullet -402 -402    
8a Gross income from fundraising events (not including
$ 51,762
of contributions reported on line 1c). See Part IV, line 18 ...
a 9,009
b Less: direct expenses ...b 9,009
c Net income or (loss) from fundraising events..MediumBullet      
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        
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        
Miscellaneous Revenue Business Code
11a            
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ......MediumBullet  
12 Total revenue. See Instructions....MediumBullet 327,125 -402   1,650
Form 990 (2011)
Form 990 (2011)
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) but are not required to complete columns (B), (C), and (D).
Check if Schedule O contains a response to any question 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 governments and organizations in the United States. See Part IV, line 21 100,500 100,500
2 Grants and other assistance to individuals in the United States. See Part IV, line 22    
3 Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16    
4 Benefits paid to or for members    
5 Compensation of current officers, directors, trustees, and key employees ....        
6 Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) ....        
7 Other salaries and wages        
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) ....        
9 Other employee benefits .......        
10 Payroll taxes ...........        
11 Fees for services (non-employees):        
a Management ......        
b Legal .........        
c Accounting ........... 900 0 900 0
d Lobbying ...........        
e Professional fundraising. See Part IV, line 17..    
f Investment management fees ......        
g Other ..........        
12 Advertising and promotion ....        
13 Office expenses ....... 123 123 0 0
14 Information technology ......        
15 Royalties ..        
16 Occupancy ...........        
17 Travel ............        
18 Payments of travel or entertainment expenses for any federal, state, or local public officials ......        
19 Conferences, conventions, and meetings .... 1,000 1,000 0 0
20 Interest ...........        
21 Payments to affiliates .......        
22 Depreciation, depletion, and amortization .....        
23 Insurance .............. 1,885 943 189 753
24 Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24f. If line 24f amount exceeds 10% of line 25, column (A) amount, list line 24f expenses on Schedule O.)
a Business Expenses 42 0 42 0
b Business Registration 345 0 345 0
c Bank Charges 761 0 761 0
d Postage 414 414 0 0
e
f All other expenses 946 946 0 0
25 Total functional expenses. Add lines 1 through 24f 106,916 103,926 2,237 753
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 (2011)
Form 990 (2011)
Page 11
Part X Balance Sheet
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash—non-interest-bearing .......... 142,496 1 332,784
2 Savings and temporary cash investments .......   2  
3 Pledges and grants receivable, net .........   3 25,000
4 Accounts receivable, net .........   4  
5 Receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of
Schedule L ..........   5  
6 Receivables from other disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B). Complete Part II of
Schedule L ..........   6  
7 Notes and loans receivable, net .............   7  
8 Inventories for sale or use ..............   8  
9 Prepaid expenses and deferred charges ............   9  
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a  
b Less: accumulated depreciation. ..... 10b     10c  
11 Investments—publicly traded securities ..........   11 5,852
12 Investments—other securities. See Part IV, line 11 ......   12  
13 Investments—program-related. See Part IV, line 11 ..   13  
14 Intangible assets .........   14  
15 Other assets. See Part IV, line 11 ...........   15  
16 Total assets. Add lines 1 through 15 (must equal line 34)... 142,496 16 363,636
Liabilities 17 Accounts payable and accrued expenses .   17  
18 Grants payable ..........   18  
19 Deferred revenue ..........   19  
20 Tax-exempt bond liabilities ..........   20  
21 Escrow or custodial account liability. Complete Part IV of Schedule D..   21  
22 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.....   25  
26 Total liabilities. Add lines 17 through 25..... 0 26 0
Net Assets or Fund Balance Organizations that follow SFAS 117, check here MediumBullet and complete lines 27 through 29, and lines 33 and 34.
27 Unrestricted net assets ..... 142,496 27 318,636
28 Temporarily restricted net assets .....   28 45,000
29 Permanently restricted net assets .....   29  
Organizations that do not follow SFAS 117, 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 ..... 142,496 33 363,636
34 Total liabilities and net assets/fund balances ..... 142,496 34 363,636
Form 990 (2011)
Form 990 (2011)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response to any question in this Part XI .........
1
Total revenue (must equal Part VIII, column (A), line 12) ...
1
327,125
2
Total expenses (must equal Part IX, column (A), line 25) ....
2
106,916
3
Revenue less expenses. Subtract line 2 from line 1 ...
3
220,209
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
142,496
5
Other changes in net assets or fund balances (explain in Schedule O) ...
5
931
6
Net assets or fund balances at end of year. Combine lines 3, 4, and 5 (must equal Part X, line 33, column (B)) ....
6
363,636
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response to any question 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
b
Were the organization’s financial statements audited by an independent accountant?........
2b
Yes
 
c
If “Yes,” to 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? If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O. ...........................
2c
Yes
 
d
If “Yes” to line 2a or 2b, check a box below to indicate whether the financial statements for the year were issued on a separate basis, consolidated basis, or both:
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 (2011)
Additional Data


Software ID: 11000175
Software Version:  
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 See separate instructions.
OMB No. 1545-0047
2011
Open to Public
Inspection
Name of the organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Employer identification number

27-0950477
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 11, check only one box.)
1
2
3
4
5
section 170(b)(1)(A)(iv). (Complete Part II.)
6
7
8
9
receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of
its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses
acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)
10
11
e
f
g
(i) a person who directly or indirectly controls, either alone or together with persons described in (ii)
Yes
No
and (iii) below, the governing body of the the supported organization? ................
11g(i)
 
 
(ii) a family member of a person described in (i) above? ......................
11g(ii)
 
 
(iii) a 35% controlled entity of a person described in (i) or (ii) above? ................
11g(iii)
 
 
h
(i)
Name of supported organization 		(ii)
EIN 		(iii)
Type of organization (described on lines 1- 9 above or IRC section (see instructions)) 		(iv)
Is the organization in col. (i) listed in your governing document? 		(v)
Did you notify the organization in col. (i) of your support? 		(vi)
Is the organization in col. (i) organized in the U.S.? 		(vii)
Amount of support?
Yes No Yes No Yes No
Total                  

For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 2
Part II
Support Schedule for Organizations Described in IRC 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 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) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ....       144,605 325,877 470,482
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.......            
3 The value of services or facilities furnished by a governmental unit to the organization without charge..            
4 Total. Add lines 1 through 3..       144,605 325,877 470,482
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)..           139,441
6 Public Support. Subtract line 5 from line 4.           331,041
Section B. Total Support
Calendar year(or fiscal year beginning in) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (f) Total
7 Amounts from line 4..       144,605 325,877 470,482
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..       316 1,650 1,966
9 Net income from unrelated business activities, whether or not the business is regularly carried on..            
10 Other income. (Explain in Part IV.) Do not include gain or loss from the sale of capital assets..         -402 -402
11 Total support (Add lines 7 through 10).           472,046
12
12
5,467
13
Section C. Computation of Public Support Percentage
14
14
0 %
15
15
 
16a
b
17a
b
18
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 3
Part III
Support Schedule for Organizations Described in IRC 509(a)(2)
(Complete only if you checked the box on line 9 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) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (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.)           0
Section B. Total Support
Calendar year (or fiscal year beginning in) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (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 IV.)            
13 Total support (Add lines 9, 10c, 11 and 12.).            
14
Section C. Computation of Public Support Percentage
15
15
0 %
16
16
 
Section D. Computation of Investment Income Percentage
17
17
0 %
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 4
Part IV
Supplemental Information. Supplemental Information. Complete this part to provide the explanation required by Part II, line 10; Part II, line 17a or 17b; or Part III, line 12. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Explanation
 
 
 
 
Schedule A (Form 990 or 990-EZ) 2011

Additional Data


Software ID: 11000175
Software Version:  
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.
OMB No. 1545-0047
2011
Name of organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Employer identification number

27-0950477
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 is not covered by the General Rule and/or the Special Rules does not 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 Part I, line 2, of its Form 990-PF, to certify that it does not 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) (2011)

Page 2
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
Name of organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
  		Employer identification number

27-0950477
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
RESTRICTED
RESTRICTED
 

     
RESTRICTED
RESTRICTED  
RESTRICTED, RESTRICTED   RESTRICTED

$RESTRICTED




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




(Complete Part II if there is a noncash contribution.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)

Page 3
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
Name of organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
  		Employer identification number

27-0950477
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) (2011)

Page 4
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
Name of organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
  		Employer identification number

27-0950477
Part III
Exclusively religious, charitable, etc., individual contributions to section 501(c)(7), (8), or (10) organizations
that total more than $1,000 for the year. 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) (2011)

Additional Data


Software ID:  
Software Version:  
SCHEDULE D
(Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
SchDMd Bullet Complete if the organization answered "Yes," to 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 See separate instructions.
OMB No. 1545-0047
2011
Open to Public Inspection
Name of the organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Employer identification number

27-0950477
Part I
Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" to Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year .......    
2 Aggregate contributions to (during year) ...    
3 Aggregate 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" to 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 8/17/06, 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 and enforcing conservation easements during the year SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, 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 170(h)(4)(B)(ii)? ....................................
9
In Part XIV, 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" to 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 XIV, 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)
Revenues included in 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
Revenues included in Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
For Privacy Act and Paperwork Reduction Act Notice, see the Intructions for Form 990
Cat. No. 52283D
Schedule D (Form 990) 2011

Schedule D (Form 990) 2011
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
Using the organization’s 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 XIV.
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" to 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 XIV 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? .....................
b
If “Yes,” explain the arrangement in Part XIV.
Part V
Endowment Funds. Complete if the organization answered "Yes" to 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 year end balance (line 1g) held as:
a
Board designated or quasi-endowment SchDMd Bullet  
b
Permanent endowment SchDMd Bullet  
c
Temporarily restricted endowment SchDMd Bullet  
The percentages in 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" to 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
 
 
4
Describe in Part XIV the intended uses of the organization's endowment funds.
Part VI
Land, Buildings, and Equipment. 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 ................        
e Other .................        
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).).......SchDMdBullet  
Schedule D (Form 990) 2011

Schedule D (Form 990) 2011
Page 3
Part VII
Investments—Other Securities. 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    
Other








Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)Small Bullet  
Part VIII
Investments—Program Related. See Form 990, Part X, line 13.
(a) Description of investment type (b) Book value (c) Method of valuation:
Cost or end-of-year market value








Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)Small Bullet  
Part IX
Other Assets. See Form 990, Part X, line 15.
(a) Description (b) Book value








Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........Small Bullet  
Part X
Other Liabilities. See Form 990, Part X, line 25.
1.(a) Description of Liability (b) Book value
Federal Income Taxes  








Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)Small Bullet  
2. Fin 48 (ASC 740) Footnote. In Part XIV, 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 (ASC740).
Schedule D (Form 990) 2011

Schedule D (Form 990) 2011
Page 4
Part XI Reconciliation of Change in Net Assets from Form 990 to Financial Statements
1 Total revenue (Form 990, Part VIII, column (A), line 12) .................... 1 327,125
2 Total expenses (Form 990, Part IX, column (A), line 25) ..................... 2 106,916
3 Excess or (deficit) for the year. Subtract line 2 from line 1 ............. 3 220,209
4 Net unrealized gains (losses) on investments .......................... 4 829
5 Donated services and use of facilities ............................. 5  
6 Investment expenses ................................... 6  
7 Prior period adjustments .................................. 7  
8 Other (Describe in Part XIV.) ................................. 8  
9 Total adjustments (net). Add lines 4 through 8 ......................... 9 829
10 Excess or (deficit) for the year per financial statements. Combine lines 3 and 9 ......... 10 221,038
Part XII Reconciliation of Revenue per Audited Financial Statements With Revenue per Return
1 Total revenue, gains, and other support per audited financial statements ....... 1 336,963
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains on investments .......... 2a 829
b Donated services and use of facilities ......... 2b  
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIV.) ............ 2d  
e Add lines 2a through 2d ..................... 2e 829
3 Subtract line 2e from line 1..................... 3 336,134
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  
b Other (Describe in Part XIV.) ........... 4b -9,009
c Add lines 4a and 4b....................... 4c -9,009
5 Total Revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5 327,125
Part XIII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return
1 Total expenses and losses per audited financial statements ............. 1 115,925
2 Amounts included on line 1 but not on Form 990, Part IX, line 25:
a Donated services and use of facilities .......... 2a  
b Prior year adjustments .............. 2b  
c Other losses ................ 2c  
d Other (Describe in Part XIV.) ............ 2d 9,009
e Add lines 2a through 2d...................... 2e 9,009
3 Subtract line 2e from line 1..................... 3 106,916
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  
b Other (Describe in Part XIV.) ............ 4b  
c Add lines 4a and 4b....................... 4c  
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5 106,916
Part XIV
Supplemental Information
Complete this part to 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; Part XI, line 8; Part XII, lines 2d and 4b; and Part XIII, lines 2d and 4b. Also complete this part to provide any additional information.
Identifier Return Reference Explanation
Pt XII Line 4b   Fundraising Expenses 9,009
Pt XIII Line 2d   Fundraising Expenses 9,009
Schedule D (Form 990) 2011

Additional Data


Software ID: 11000175
Software Version:  




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" to 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 arrowSee separate instructions.
OMB No. 1545-0047
2011
Open to Public Inspection
Name of the organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Employer identification number

27-0950477
Part I
Fundraising Activities. Complete if the organization answered "Yes" to Form 990, Part IV, line 17.
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. Form 990-EZ filers are not required to complete this table.
(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 funds or has been notified it is exempt from registration or licensing.
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50083H
Schedule G (Form 990 or 990-EZ) 2011
Schedule G (Form 990 or 990-EZ) 2011
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" to Form 990, Part IV, line 18, or reported more than $15,000 on Form 990-EZ, line 6a. List events with gross receipts greater than $5,000.
(a) Event #1

MI Walk
(event type) 		(b) Event #2

TX Scramble
(event type) 		(c) Other Events

  
(total number) 		(d) Total Events
(Add col. (a) through col. (c))
VerticalRevenue 1 Gross receipts . . . 25,588 7,670 27,513 60,771
2 Less: Charitable
contributions . . . 		20,833 6,295 24,634 51,762
3 Gross income (line 1
minus line 2) . . . 		4,755 1,375 2,879 9,009
VerticalDirectExpenses 4 Cash prizes . . .        
5 Non-cash prizes . . 4,755 1,375 2,879 9,009
6 Rent/facility costs . .        
7 Food and beverages . .        
8 Entertainment . . .        
9 Other direct expenses .        
10 Direct expense summary. Add lines 4 through 9 in column (d) ........... right arrow 9,009
11 Net income summary. Combine lines 3 and 10 in column (d)............ right arrow  
Part III
Gaming. Complete if the organization answered "Yes" to 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 Non-cash 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. Combine lines 1 and 7 in column (d) .......... right arrow  
9
Enter the state(s) in which the organization operates gaming activities:
a
Is the organization licensed to operate 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:
 
11
Does the organization operate 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? ..........................
Schedule G (Form 990 or 990-EZ) 2011
Schedule G (Form 990 or 990-EZ) 2011
Page 3
13
Indicate the percentage of gaming activity operated in:
a
The organization's facility ......................
13a
 
b
An outside facility ........................
13b
 
14
Provide 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:
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
Complete this part to provide additional information for responses to quuestion on Schedule G (see instructions.)
Identifier ReturnReference Explanation
Schedule G (Form 990 or 990-EZ) 2011
Additional Data


Software ID:  
Software Version:  
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," to Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990
OMB No. 1545-0047
2011
Open to Public
Inspection
Name of the organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Employer identification number
27-0950477
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 Governments and Organizations in the United States. Complete if the organization answered "Yes" to
Form 990, Part IV, line 21 for any recipient that received more than $5,000. Check this box if no one recipient received more than $5,000. Use
Part IV and Schedule I-1 (Form 990) if additional space is needed ......................... lBullet
(a) Name and address of organization
or government		 (b) EIN (c) IRC Code 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
non-cash assistance		 (h) Purpose of grant
or assistance
(1) TRUSTEES UNIVERSITY OF PA3451 WALNUT STREET
PHILADELPHIA,PA19104 		23-1352685   33,000   N/A N/A Research
(2) REGENTS UNIV OF CA1111 FRANKLIN ST
OAKLAND,CA94607 		94-3067788   50,000   N/A N/A Research
(3) INT'L RETT SYNDROME4600 DEVITT DRIVE
CINCINATTI,OH45246 		31-1682518 501(c)(3) 17,500   N/A N/A Research


















2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
3
3
Enter total number of other organizations listed in the line 1 table ......................... . Bullet Image
0
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2011

Schedule I (Form 990) 2011
Page 2
Part III
Grants and Other Assistance to Individuals in the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 22.
Use Schedule I-1 (Form 990) if additional space is needed.
(a)Type of grant or assistance (b)Number of
recipients		 (c)Amount of
cash grant		 (d)Amount of
non-cash assistance		 (e)Method of valuation (book,
FMV, appraisal, other)		 (f)Description of non-cash assistance













Part IV
Supplemental Information. Complete this part to provide the information required in Part I, line 2, and any other additional information.
Identifier Return Reference Explanation
Pt I Line 2   A group of Board members monitor how these funds are being used on a
    monthly basis. Reports are provided to the Organization by the grantee
    organizations that give updates on research activities.
Schedule I (Form 990) 2011


Additional Data


Software ID: 11000175
Software Version:  


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 to provide any additional information.
MediumBullet Attach to Form 990 or 990-EZ.
OMB No. 1545-0047
2011
Open to Public
Inspection
Name of the organization
INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
 
Employer identification number

27-0950477
Identifier Return Reference Explanation
Pt VI, Line 11a   The form is reviewed by the Board Treasurer and other
    members of the Board. All questions are reviewed to make
    certain that there are no incorrect answers.
Pt VI, Line 19   Upon request, they are provided to grantors, contributors,
    and Board members.
Pt XI   Changes In Net Assets:
    Prior Period Adjustment At 1/1/11 - 102
    Unrealized gain on securities held at 12/31/11 - 829
    TOTAL 931
Pt XII, Line 1   Reason for change in accounting method - The Organization
    is now having an annual audit. They are required to be
    on the accrual basis beginning in 2011.
Pt VI, Line 4   Amended by-laws were enacted during 2011.The number and
    terms of the members of the Board of Directors were
    changed, and a provision was added regarding how a
    deadlock should be managed if Board members cannot reach a
    decision about important Organization matters.
Pt VI, Line 6   The Organization has members that pay a fee and are
    entitled to serve on special advisory Boards and
    committees.
Pt VI, Line 12c   Questionnaires are required to be completed by all
    Board members annually. Should there be reasons for
    concern, there is a detailed review of all
    transactions that appear to be a cause for concern.
Form 990EZ, Part I, Line 16   BANK FEES FEDERAL FEES ACCOUNTING FEES STATE REGISTRATION FEES OFFICE EXPENSE
Form 990, Part IX, Line 24f   PRINTING 17. 17. 0. 0. TELEPHONE 21. 21. 0. 0. VOLUNTEER EXPENSES 171. 171. 0. 0. PROFESSIONAL FEES 485. 485. 0. 0. OPERATIONS 252. 252. 0. 0.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2011

Additional Data


Software ID: 11000175
Software Version: