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.
Attach to Form 990 or Form 990-EZ. See separate instructions. Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
THE ALS ASSOCIATION MINNESOTA NORTH DAKOTA SOUTH DAKOTA CHAPTER
Employer identification number
41-1756085
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
By checking this box, I certify that the organization is not controlled directly or indirectly by one or more disqualified persons other than foundation managers and other than one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2).
f
If the organization received a written determination from the IRS that it is a Type I, Type II, or Type III supporting organization, check this box
..................................................
g
Since August 17, 2006, has the organization accepted any gift or contribution from any of the following persons?
(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 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
Provide the following information about the supported organization(s).
(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 monetary support
Yes
No
Yes
No
Yes
No
Total
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 2
Part II
Support Schedule for Organizations Described in Sections 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) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(f) Total
1
Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") ....
2,593,332
2,520,005
2,768,735
3,541,596
3,010,655
14,434,323
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
2,593,332
2,520,005
2,768,735
3,541,596
3,010,655
14,434,323
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)..
6
Public support. Subtract line 5 from line 4.
14,434,323
Section B. Total Support
Calendar year
(or fiscal year beginning in)
(a) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(f) Total
7
Amounts from line 4..
2,593,332
2,520,005
2,768,735
3,541,596
3,010,655
14,434,323
8
Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources...
9,979
11,133
5,492
2,288
1,748
30,640
9
Net income from unrelated business activities, whether or not the business is regularly carried on..
10
Other income. Do not include gain or loss from the sale of capital assets (Explain in Part IV.)..
11
Total support (Add lines 7 through 10).
14,464,963
12
Gross receipts from related activities, etc. (see instructions)
..................
12
1,039,276
13
First five years.
If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization,
check this box and stop here.................................................
Section C. Computation of Public Support Percentage
14
Public support percentage for 2013 (line 6, column (f) divided by line 11, column (f))
.........
14
99.790 %
15
Public support percentage for 2012 Schedule A, Part II, line 14
...............
15
99.570 %
16a
33 1/3% support test—2013.
If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization
.......................
b
33 1/3% support test—2012.
If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization
.....................
17a
10%-facts-and-circumstances test—2013.
If the organization did not check a box on line 13, 16a, or 16b, and line 14
is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain
in Part IV how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported
organization
.....................................................
b
10%-facts-and-circumstances test—2012.
If the organization did not check a box on line 13, 16a, 16b, or 17a, and line
15 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here.
Explain in Part IV how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization
................................................
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
.....................................................
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 3
Part III
Support Schedule for Organizations Described in Section 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) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(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)
(a) 2009
(b) 2010
(c) 2011
(d) 2012
(e) 2013
(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
First five years.
If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a 501(c)(3) organization,
check this box and stop here.............................................
Section C. Computation of Public Support Percentage
15
Public support percentage for 2013 (line 8, column (f) divided by line 13, column (f))
.........
15
16
Public support percentage from 2012 Schedule A, Part III, line 15
...............
16
Section D. Computation of Investment Income Percentage
17
Investment income percentage for 2013 (line 10c, column (f) divided by line 13, column (f))
......
17
18
Investment income percentage from 2012 Schedule A, Part III, line 17
.............
18
19a
33 1/3% support tests—2013.
If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization
........
b
33 1/3% support tests—2012.
If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization
.....
20
Private foundation.
If the organization did not check a box on line 14, 19a, or 19b, check this box and see instructions
.....
Schedule A (Form 990 or 990-EZ) 2013
Schedule A (Form 990 or 990-EZ) 2013
Page 4
Part IV
Supplemental Information.
Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; and 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) 2013
Additional Data
Software ID:
Software Version:
-
TIN:
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.
Attach to Form 990 or 990-EZ.
Information about Schedule O (Form 990 or 990-EZ) and its instructions is at
www.irs.gov/form990.
OMB No. 1545-0047
2013
Open to Public Inspection
Name of the organization
THE ALS ASSOCIATION MINNESOTA NORTH DAKOTA SOUTH DAKOTA CHAPTER
Employer identification number
41-1756085
Return Reference
Explanation
FORM 990, PART III, LINE 4A
AMYOTROPHIC LATERAL SCLEROSIS (ALS), MORE COMMONLY REFERRED TO AS LOU GEHRIGS DISEASE, IS A DEGENERATIVE DISEASE OF THE CENTRAL NERVOUS SYSTEM, CHARACTERIZED BY THE DEATH OF THE MOTOR NEURONS (SPECIFIC NERVE CELLS). ALS RESULTS IN GRADUAL, PROGRESSIVE WEAKNESS AND WASTING AWAY OF VOLUNTARY MUSCLES, OFTEN LEADING TO TOTAL PARALYSIS. THE LIFE EXPECTANCY OF A PERSON WITH ALS IS USUALLY TWO TO FIVE YEARS FROM TIME OF DIAGNOSIS. WITH RECENT ADVANCES IN RESEARCH AND IMPROVED MEDICAL CARE, MANY PEOPLE WITH ALS ARE LIVING LONGER AND MORE PRODUCTIVE LIVES. HALF OF ALL THOSE AFFECTED MAY LIVE AT LEAST THREE YEARS OR MORE AFTER DIAGNOSIS. ABOUT 20 PERCENT LIVE FIVE YEARS OR MORE, AND UP TO TEN PERCENT WILL SURVIVE MORE THAN TEN YEARS. ALS OCCURS THROUGHOUT THE WORLD WITH NO RACIAL, ETHNIC, OR SOCIOECONOMIC BOUNDARIES. ALS CAN STRIKE ANYONE. MOST PEOPLE WHO DEVELOP ALS ARE BETWEEN THE AGES OF 40 AND 70, WITH AN AVERAGE AGE OF 55 AT THE TIME OF DIAGNOSIS. HOWEVER, PEOPLE AS YOUNG AS 17 AND PEOPLE IN THEIR 90'S HAVE BEEN DIAGNOSED WITH ALS. EVERY WEEK AN AVERAGE OF TWO MINNESOTANS ARE DIAGNOSED WITH ALS AND TWO SUCCUMB TO THE DISEASE. THERE ARE APPROXIMATELY 324 PEOPLE LIVING WITH ALS IN MINNESOTA AT ANY ONE TIME. IN NORTH DAKOTA THERE ARE APPROXIMATELY 42 PEOPLE LIVING WITH ALS AT ANY ONE TIME. ON AVERAGE EACH MONTH, ONE PERSON IS DIAGNOSED WITH ALS AND ONE PERSON DIES FROM THE DISEASE. IN SOUTH DAKOTA THERE ARE APPROXIMATELY 48 PEOPLE LIVING WITH ALS AT ANY ONE TIME. ON AVERAGE EACH MONTH, 1.5 PEOPLE ARE DIAGNOSED WITH ALS AND THAT SAME NUMBER DIE FROM THE DISEASE. CHAPTER PROGRAMS INCLUDE: 1. HRBEK-SING COMMUNICATION AND ASSISTIVE DEVICE PROGRAM: THIS PROGRAM ALLOWS INDIVIDUALS WHO HAVE LOST THEIR ABILITY TO VERBALLY COMMUNICATE DUE TO ALS, TO BORROW COMMUNICATION DEVICES THAT ARE NOT COVERED BY MEDICAL INSURANCE. THE PROGRAM ALSO PROVIDES ELECTRONIC AIDS TO DAILY LIVING AND COMPUTER ACCESS TECHNOLOGIES TO THESE INDIVIDUALS SO THEY CAN MAINTAIN THEIR INDEPENDENCE AS THEIR DISEASE PROGRESSES. LAST FISCAL YEAR 219 PEOPLE USED THIS PROGRAM AND OVER 1,100 PIECES OF EQUIPMENT WENT IN AND OUT OF THE LOAN CLOSET. 2. JACK NORTON FAMILY RESPITE PROGRAM: THIS PROGRAM PROVIDES SHORT PERIODS OF RESPITE FROM THE STRESSFUL RESPONSIBILITY OF PROVIDING AROUND-THE-CLOCK CARE FOR A LOVED ONE LIVING WITH ALS. SKILLED HOMECARE PERSONNEL COME INTO THE HOME TO CARE FOR THE PERSON WITH ALS, THEREBY ALLOWING THE FULL-TIME PRIMARY FAMILY CAREGIVER TIME TO RELAX, DO ERRANDS, KEEP APPOINTMENTS OR VISIT WITH FRIENDS. THE CHAPTER PROVIDES UP TO 18 HOURS OF RESPITE CARE EACH MONTH TO FAMILIES THAT QUALIFY FOR THIS PROGRAM. LAST YEAR THE CHAPTER PAID FOR OVER 8,997 RESPITE HOURS FOR 91 FAMILIES. 3. DURABLE MEDICAL EQUIPMENT LOAN POOL: THE EQUIPMENT LOAN POOL PROVIDES DURABLE MEDICAL EQUIPMENT TO PERSONS WITH ALS TO HELP THEM MAINTAIN THEIR INDEPENDENCE AND PHYSICAL SAFETY. THE LOAN POOL HAS EQUIPMENT DONATED BY PEOPLE WITH ALS AND THEIR FAMILIES, AND IS HOUSED IN MULTIPLE LOCATIONS THROUGHOUT THE CHAPTER'S SERVICE AREA. EXAMPLES OF EQUIPMENT ARE: HOSPITAL BEDS, WHEELCHAIRS, WALKERS, BATHROOM EQUIPMENT, MATTRESSES, ETC. LAST YEAR 333 PEOPLE UTILIZED THIS PROGRAM. AN AVERAGE OF 250 TO 300 ITEMS ROTATED THROUGH THE POOL EACH MONTH, WITH MORE THAN 2,700 ITEMS GOING IN AND OUT OF 8 DIFFERENT DURABLE MEDICAL EQUIPMENT LOAN POOL LOCATIONS. 4. OCCUPATIONAL THERAPY(OT)/PHYSICAL THERAPY (PT) PROGRAM: THIS PROGRAM PROVIDES INDIVIDUALS WITH ALS THE SERVICES OF ALS-EXPERIENCED OT/PTS FOR HOME EVALUATIONS, EQUIPMENT ASSESSMENT, PROPER TRANSFER TECHNIQUES, MOBILITY, ACTIVITIES OF DAILY LIVING, TRAINING IN RANGE-OF-MOTION, STRETCHING EXERCISES AND THE TEACHING OF THERAPEUTIC PROCEDURES TO CARE PROVIDERS OF PERSONS WITH ALS. LAST YEAR 38 PEOPLE RECEIVED HOME VISITS, NOT PAID FOR BY INSURANCE, THROUGH THIS PROGRAM. 5. SUPPORT GROUPS: THERE ARE SEVERAL MONTHLY OR QUARTERLY ALS SUPPORT GROUPS LOCATED THROUGHOUT THE CHAPTER'S SERVICE AREA. SOME OF THE SUPPORT GROUPS HAVE EDUCATIONAL SPEAKERS AND SOME BREAK INTO SMALLER GROUPS, SO THE NEEDS OF ALL THOSE WHO ATTEND CAN BE ADDRESSED. MORE THAN 141 DIFFERENT PEOPLE PARTICIPATED IN EIGHT DIFFERENT SUPPORT GROUPS LOCATED THROUGHOUT THE SERVICE AREA. THE CHAPTER ALSO HOSTS A BEREAVEMENT GROUP FOR THOSE WHO HAVE LOST A LOVED ONE TO ALS. 6. FAMILY ASSISTANCE PROGRAM: THE PURPOSE OF THE FAMILY ASSISTANCE PROGRAM IS TO INCREASE THE QUALITY OF LIFE FOR THOSE WITH ALS BY FREEING UP THEIR TIME AND ENERGY FOR MORE ENJOYABLE THINGS. VOLUNTEERS HUMBLY PERFORM DAILY TASKS OF LIVING LIKE CLEANING, RUNNING ERRANDS, MAKING MEALS, AND MUCH MORE. LAST YEAR, VOLUNTEERS LIFTED BURDENS IN THE LIVES OF 34 PEOPLE WITH ALS AND THEIR FAMILIES. 7. ADVOCACY: THE CHAPTER WORKS TO IMPROVE VARIOUS SITUATIONS WHICH PEOPLE WITH ALS AND THEIR FAMILIES FACE IN THEIR DAILY STRUGGLE WITH ALS. THESE INCLUDE IDENTIFYING AND ADDRESSING CHALLENGES AND OPPORTUNITIES ON LEGISLATIVE AND ADMINISTRATIVE LEVELS AND SHAPING POLICIES AND ACTIONS IN THE INTEREST OF ALL CONSTITUENTS. 8. OTHER SERVICES: THE CHAPTER ALSO EMPLOYS A NURSE, SOCIAL WORKER, OCCUPATIONAL THERAPISTS AND A CHAPLAIN TO HELP EACH FAMILY THROUGH THE PROGRESSION OF ALS. THEY ARE AVAILABLE FOR PATIENT AND FAMILY CONSULTATION AND SUPPORT, ADVANCE CARE DIRECTIVES, AND PROVIDE RESOURCE INFORMATION. IN ADDITION, THE CHAPTER HOUSES A LENDING LIBRARY, PUBLISHES A BI-MONTHLY NEWSLETTER, AND OFFERS A VARIETY OF INFORMATION ON THE WEBSITE: WWW.ALSMN.ORG.
FORM 990, PART VI, SECTION B, LINE 11
THE FINANCE COMMITTEE REVIEWED THE 990 WITH THE TAX PREPARER. ANY QUESTIONS OR DISCREPANCIES ARE ADDRESSED WITH THE PREPARER BEFORE PRESENTING THE 990 TO THE GOVERNING BOARD. THE 990 IS THEN PRESENTED TO THE BOARD FOR FULL APPROVAL.
FORM 990, PART VI, SECTION B, LINE 12C
ALL BOARD MEMBERS ARE REQUIRED TO SIGN THIS FORM ON AN ANNUAL BASIS, AND THE EXECUTIVE DIRECTOR OVERSEES ANY CONFLICT OF INTERESTS.
FORM 990, PART VI, SECTION B, LINE 15
A SELF-EVALUATION FORM IS FILLED OUT BY THE EXECUTIVE DIRECTOR. THE BOARD PRESIDENT OBTAINS FEEDBACK FROM THE STAFF AND THE BOARD AND THEN FILLS OUT A RESPONSE EVALUATION FORM. THE EVALUATIONS ARE THEN REVIEWED BY THE PRESIDENT AND THE EXECUTIVE DIRECTOR OF THE ORGANIZATION. THIS OCCURS ANNUALLY. ANY RAISES ARE DECIDED ON BY THE BOARD OF DIRECTORS AT THIS TIME. FOR OTHER KEY OFFICERS AND EMPLOYEES, THE EXECUTIVE DIRECTOR REVIEWS THE VP OF CARE SERVICES, VP OF DEVELOPMENT AND VP OF FINANCE AND GETS INPUT FROM THE STAFF AND BOARD OF DIRECTORS AS PART OF THIS PROCESS. RAISES ARE REVIEWED ANNUALLY IN CONJUNCTION WITH THE PREPARATION OF THE BUDGET NEAR THE CALENDAR YEAR END.
FORM 990, PART VI, SECTION C, LINE 19
GOVERNING DOCUMENTS INCLUDING CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE MADE AVAILABLE UPON REQUEST.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.