Nonprofit · EIN 36-3320440
FAMILIES OF SMA
Also known as CURE SMA
Tax-exempt · ELK GROVE VLG, IL 60007
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| June 30, 2025 | 990 | $15,213,970 | $14,019,399 | $1,194,571 | $10,645,251 | $3,222,762 | $7,422,489 |
| June 30, 2024 | 990 | $14,785,235 | $15,621,865 | -$836,630 | $10,703,968 | $4,582,639 | $6,121,329 |
Financial details: 990 for the year ended June 30, 2025
Revenue
- Contributions, gifts and grants
- $7,673,243
- Program service revenue
- $6,912,298
- Investment income
- $209,381
- Net gain from sales of assets
- $56,557
- Net income from fundraising events
- $104,641
- Other revenue
- $419,048
Expenses
- Grants and similar amounts paid
- $2,564,862
- Compensation of officers, directors and key employees
- $1,168,801
- Other salaries and wages
- $3,747,629
- Salaries, compensation and benefits (total)
- $5,683,143
- Professional fundraising fees
- $0
- Legal fees
- $4,425
- Accounting fees
- $36,050
- Occupancy
- $123,018
- Travel
- $204,728
- Depreciation
- $135,755
- Program services (functional)
- $10,840,169
- Management and general (functional)
- $1,300,650
- Fundraising (functional)
- $1,878,580
Balance sheet and other
- Total assets, start of year
- $10,703,968
- Total assets, end of year
- $10,645,251
- Total liabilities, end of year
- $3,222,762
- Net assets, end of year
- $7,422,489
- Land, buildings and equipment
- $59,085
- Publicly traded securities
- $2,391,493
- Net assets without donor restrictions
- $2,609,833
- Net assets with donor restrictions
- $4,812,656
- Gross receipts
- $16,238,049
- Employees
- 53
- Volunteers
- 6,800
- Year formed
- 1984
- State of legal domicile
- IL
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended June 30, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| KENNETH HOBBY | PRESIDENT Officer | 70 | $329,195 | $19,611 |
| JAMIE GIBSON | CHIEF DEVELOPMENT OFFICER Key employee | 60 | $266,038 | $28,541 |
| MARLINE PAGAN | CHIEF OPERATING OFFICER Key employee | 60 | $208,905 | $30,552 |
| MARY SCHROTH | CHIEF MEDICAL OFFICER (THROUGH 3/31/25) Key employee | 60 | $218,342 | $10,202 |
| COLLEEN MCCARTHY O'TOOLE | SR VICE PRESIDENT, COMMUNI Highest-paid employee | 60 | $175,435 | $27,061 |
| MAYNARD FRIESZ | VICE PRESIDENT, POLICY Highest-paid employee | 50 | $149,595 | $13,548 |
| MARY CURRY | VICE PRESIDENT, CLINICAL RESEARCH & CARE Highest-paid employee | 50 | $138,474 | $20,241 |
| JACKIE GLASCOCK | VICE PRESIDENT OF RESEARCH Highest-paid employee | 50 | $146,346 | $7,311 |
| JESSE AYNES | VICE PRESIDENT OF DEVELOPMENT Highest-paid employee | 50 | $135,299 | $9,819 |
| ROBERT GRAHAM | DIRECTOR Trustee or director | 2 | $0 | $0 |
| PETER STATILE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MARK MOORE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MARC GINSKY | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KAREN MCROY-NEGRIN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BAKRI ELSHEIKH | DIRECTOR Trustee or director | 2 | $0 | $0 |
21 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| JOE WISEMAN | DIRECTOR Trustee or director | 2 | $0 |
| ROB LOCKWOOD | DIRECTOR Trustee or director | 2 | $0 |
| KELLY JANKOWSKI | DIRECTOR Trustee or director | 2 | $0 |
| AMY MEDINA | DIRECTOR Trustee or director | 2 | $0 |
| GILLIAN MULLINS | DIRECTOR (THROUGH 12/31/24) Trustee or director | 2 | $0 |
| EDMUND LEE | DIRECTOR (THROUGH 12/31/24) Trustee or director | 2 | $0 |
| DIANA CASTRO | DIRECTOR Trustee or director | 2 | $0 |
| BRIAN SNYDER | DIRECTOR Trustee or director | 2 | $0 |
| BRIANNA GROSS | DIRECTOR Trustee or director | 2 | $0 |
| JACLYN GREENWOOD | DIRECTOR Trustee or director | 2 | $0 |
| COREY BRAASTAD | DIRECTOR Trustee or director | 2 | $0 |
| ALLYSON HENKEL | DIRECTOR Trustee or director | 2 | $0 |
| COLLIN POLLOCK | DIRECTOR (START 4/26/25) Trustee or director | 2 | $0 |
| RACHEL BROWN | DIRECTOR (START 4/26/25) Trustee or director | 2 | $0 |
| TYLER DUKES | DIRECTOR (START 4/26/25) Trustee or director | 2 | $0 |
| KALEEN ROBINSON | DIRECTOR Trustee or director | 2 | $0 |
| SPENCER PERLMAN | DIRECTOR Trustee or director | 2 | $0 |
| NICK FARRELL | BOARD CHAIR Trustee or director, Officer | 5 | $0 |
| BRADLEY A NUNEMAKER | TREASURER & VICE CHAIR Trustee or director, Officer | 5 | $0 |
| SHANNON ZERZAN | DIRECTOR Trustee or director | 5 | $0 |
| JOHN WEBER | DIRECTOR (START 10/1/2024) Trustee or director | 2 | $0 |
990 for the year ended June 30, 2024: 32 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| KENNETH HOBBY | PRESIDENT Officer | 70 | $338,969 | $19,102 |
| MARY SCHROTH | CHIEF MEDICAL OFFICER Key employee | 60 | $280,222 | $19,442 |
| MARLINE PAGAN | CHIEF OPERATING OFFICER Key employee | 60 | $223,535 | $28,697 |
| COLLEEN MCCARTHY O'TOOLE | SR VICE PRESIDENT, COMMUNI Highest-paid employee | 60 | $176,138 | $26,598 |
| MAYNARD FRIESZ | VICE PRESIDENT, POLICY Highest-paid employee | 50 | $145,434 | $17,927 |
| AMY THOMASSON | VICE PRESIDENT, MARKETING & COMMUNICATION (THROUGH Highest-paid employee | 50 | $147,429 | $4,173 |
| JACKIE GLASCOCK | VICE PRESIDENT OF RESEARCH Highest-paid employee | 40 | $143,876 | $6,919 |
| JAMIE GIBSON | CHIEF DEVELOPMENT OFFICER Highest-paid employee | 40 | $142,692 | $6,953 |
| ALLYSON HENKEL | DIRECTOR Trustee or director | 2 | $0 | $0 |
| AMY MEDINA | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BAKRI ELSHEIKH | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BRAD NUNEMAKER | TREASURER & VICE CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| BRIAN SNYDER | DIRECTOR Trustee or director | 2 | $0 | $0 |
| BRIANNA GROSS | DIRECTOR (START 1/1/24) Trustee or director | 2 | $0 | $0 |
| COREY BRAASTAD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| DIANA CASTRO | DIRECTOR Trustee or director | 2 | $0 | $0 |
| EDMUND LEE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| GILLIAN MULLINS | DIRECTOR Trustee or director | 2 | $0 | $0 |
| JACLYN GREENWOOD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| JOE WISEMAN | DIRECTOR (START 4/20/24) Trustee or director | 2 | $0 | $0 |
| KALEEN ROBINSON | DIRECTOR Trustee or director | 2 | $0 | $0 |
| KAREN MCROY-NEGRIN | DIRECTOR (START 1/1/24) Trustee or director | 2 | $0 | $0 |
| KELLY JANKOWSKI | DIRECTOR Trustee or director | 2 | $0 | $0 |
| MARC GINSKY | DIRECTOR (START 4/20/24) Trustee or director | 2 | $0 | $0 |
| MARK MOORE | DIRECTOR (START 4/20/24) Trustee or director | 2 | $0 | $0 |
| NICK FARRELL | BOARD CHAIR Trustee or director, Officer | 5 | $0 | $0 |
| PETER STATILE | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ROB LOCKWOOD | DIRECTOR Trustee or director | 2 | $0 | $0 |
| ROBERT GRAHAM | DIRECTOR Trustee or director | 2 | $0 | $0 |
| SHANNON ZERZAN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| SPENCER PERLMAN | DIRECTOR Trustee or director | 2 | $0 | $0 |
| TOM MURRAY | DIRECTOR (THROUGH 12/31/23) Trustee or director | 2 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 925 BUSSE RD, ELK GROVE VLG, IL 60007-2400
- Principal officer (990 for 2024)
- KENNETH HOBBY, 50 E COMMERCE DR 90, SCHAUMBURG, IL 60173
- Signed the 990
- KENNETH HOBBY, PRESIDENT
- Phone
- (847) 709-6318
- Website
- WWW.CURESMA.ORG
- Return prepared by
- WARADY & DAVIS LLP
Mission
OUR MISSION IS TO DRIVE RESEARCH FOR TREATMENTS AND A CURE FOR SMA, AND TO SUPPORT AND EMPOWER EVERYONE IMPACTED BY SMA TODAY.
Program accomplishments
- INDIVIDUALS WITH SMA NEED SPECIALIZED CARE AND EQUIPMENT, WHICH CAN PUT ENORMOUS LOGISTICAL AND FINANCIAL PRESSURE ON FAMILIES. CURE SMA IS COMMITTED TO MAKING SURE THAT FAMILIES HAVE THE BEST, MOST ACCURATE INFORMATION ABOUT SMA AND WHAT IT MEANS FOR THEM, AND TO MAKING SURE THAT THEY UNDERSTAND ALL THE OPTIONS AND RESOURCES AVAILABLE TO THEM FROM DAY-TO-DAY CARE TO THE CHANGING LANDSCAPE OF RESEARCH BREAKTHROUGHS AND TREATMENTS. THIS INCLUDES OUR CARE SERIES BOOKLETS, WHICH ARE SENT OUT AS PART OF INFORMATIONAL PACKETS AVAILABLE AT NO COST TO ANYONE WHO REQUESTS ONE. DEVELOPED BY MEDICAL EXPERTS AND REVIEWED BY FAMILIES, THESE BOOKLETS COVER TOPICS SUCH AS BREATHING, NUTRITION, PALLIATIVE CARE, GENETICS, MUSCULOSKELETAL ISSUES, AND MORE. IN ADDITION, OUR EQUIPMENT POOL GIVES FAMILIES ACCESS TO SPECIALIZED ITEMS LIKE CAR BEDS, STROLLERS AND BATHING SYSTEMS AT NO COST. EVERY NEWLY-DIAGNOSED FAMILY RECEIVES A CARE PACKAGE FROM CURE SMA, FULL OF TOYS APPROPRIATE TO THE CHILD'S TYPE OF THE DISEASE, IMPARTIAL INFORMATION FOR PARENTS, AND USEFUL ITEMS SUGGESTED BY OTHER SMA PARENTS BASED ON THEIR OWN EXPERIENCES. EVERY NEW ADULT TO THE COMMUNITY RECEIVES A PACKAGES OF SPECIAL INDEPENDENCE RELATED ITEMS.CURE SMA ALSO EDUCATES THE PUBLIC ABOUT SMA, TO STRENGTHEN THE SUPPORT AVAILABLE TO FAMILIES. THIS INCLUDES DIRECTIONS, A BIANNUAL FAMILY SUPPORT NEWSLETTER, AND COMPASS, A QUARTERLY UPDATE ON RESEARCH DEVELOPMENTSExpenses $4,835,026 · grants $196,619 · revenue $245,468
- CURE SMA FOCUSES ON THREE DIFFERENT YET EQUALLY CRITICAL AND INTERDEPENDENT RESEARCH AREAS: BASIC RESEARCH, TO UNDERSTAND THE CAUSE AND BIOLOGY OF SMA; DRUG DISCOVERY, TO CONVERT BASIC RESEARCH IDEAS INTO PRACTICAL NEW DRUG CANDIDATES; AND CLINICAL & REGULATORY RESEARCH, TO PROVIDE THE INFRASTRUCTURE TO TEST THE DRUG CANDIDATES. DURING THIS PERIOD CURE SMA FUNDED SIX NEW AND SIX ONGOING BASIC RESEARCH GRANTS. WE ALSO FUNDED AND EXECUTED MULTIPLE CLINICAL AND REGULATORY FOCUSED PROJECTS, TO INCREASE SMA CLINICAL TRIAL SITE CAPACITY AND READINESS, TO PROVIDE REGULATORY AUTHORITIES WITH DATA ON THE SMA POPULATION AND THEIR REPORTED UNMET NEEDS, AND TO COLLECT DATA TO UNDERSTAND THE PATIENT EXPERIENCE WITH SMA. CURRENTLY, THERE ARE THREE APPROVED DRUGS FOR SMA, WITH ANOTHER SEVERAL DOZEN DRUG PROGRAMS IN DEVELOPMENT, INCLUDING FIVE IN CLINICAL TRIALS. CURRENTLY, TWO INVESTIGATIONAL DRUGS ARE AWAITING FDA APPROVAL.CURE SMA HAVE THREE PRIMARY DATABASES FOR DATA COLLECTION: A PATIENT-REPORTED DATABASE WITH DATA FROM OVER 11,000 IMPACTED INDIVIDUALS WORLDWIDE THAT ALSO INCORPORATES LONGITUDINAL DATA FROM OUR ANNUAL COMMUNITY UPDATE SURVEY; THE SMA CLINICAL DATA REGISTRY (CDR) THAT CONTAINS ELECTRONIC MEDICAL RECORD (EMR) SOURCED DATA FROM U.S. BASED SMA CARE CENTER NETWORK SITES; AND THE NEWBORN SCREENING REGISTRY WITH DATA FROM PARENTS OF BABIES WITH SMA THAT WERE IDENTIFIED THROUGH STATEWIDE SMA NEWBORN SCREENING. THE ABOVE DATA SOURCES ARE COMBINED AND ANALYZED ANNUALLY TO IDENTIFY TRENDS IN DEMOGRAPHICS, DIAGNOSIS, SMA TREATMENTS, UNMET NEEDS, PATIENT CARE AND OUTCOMES. THE MOST RECENT ANALYZES WERE PUBLISHED IN THE STATE OF SMA 2024 REPORT AVAILABLE ON OUR WEBSITE. DATA COLLECTED IS ALSO SHARED IN PEER-REVIEWED LITERATURE. CURE SMA PUBLISHED "SMA COMMUNITY PRIORITIES FOR FUTURE DRUG THERAPIES: CROSS-SECTIONAL SURVEY FINDING REPRESENTING 410 ADULTS WITH SMA" IN NEUROLOGY AND THERAPY IN JUNE 2025. IN ADDITION, CURE SMA SUPPORTS THE SMA INDUSTRY COLLABORATION. ESTABLISHED IN 2016, THE COLLABORATION IS A MULTI-FACETED PARTNERSHIP THAT BRINGS TOGETHER PHARMACEUTICAL COMPANIES, CURE SMA, AND OTHER NONPROFIT ORGANIZATIONS TO SHARE INFORMATION, IDEAS, AND DATA. THE SMA INDUSTRY COLLABORATION WORKS TOGETHER TO ADDRESS SCIENTIFIC, CLINICAL, AND REGULATORY TOPICS THAT ARE CRITICAL TO ADVANCING DRUG DEVELOPMENT IN SMA AND WILL BENEFIT THE BROADER SMA COMMUNITY. CURE SMA CO-CREATED A NEW HEALTHCARE PROVIDER ENDURING CONTINUING MEDICAL EDUCATION PROGRAM IN ADDITION TO THE IN-PERSON CURE SMA CLINICAL CARE SESSION OFFERED IN JUNE 2025. RESOURCES WERE ALSO DEVOTED TO MAINTAINING WEBSITE LISTINGS OF SMA NEWBORN SCREENING REFERRAL CENTERS AND TREATMENT CENTERS THAT PROVIDE FDA-APPROVED SMA TREATMENTS.Expenses $5,416,203 · grants $2,368,243 · revenue $1,650,318
- WE HOSTED THE 2025 ANNUAL SMA CONFERENCE IN ANAHEIM, CA WITH OVER 2,739 REGISTERED ATTENDEES. OUR ANNUAL CONFERENCE IS AN INVALUABLE RESOURCE FOR THE ENTIRE SMA COMMUNITY. THE CONFERENCE IS THE LARGEST IN THE WORLD FOCUSED SPECIFICALLY ON SMA. THE RESEARCHER AND CLINICAL CARE CONFERENCE ATTRACTED THE TOP SCIENTISTS AND COMPANIES IN THE FIELD. THE COMMUNITY CONFERENCE INCLUDES A VARIETY OF WORKSHOPS, KEYNOTE SESSIONS WITH LEADING EXPERTS, AND MORE-PLUS GREAT EVENTS SUCH AS OUR TEEN AND ADULTS WITH SMA SOCIALS, THE FAMILY FRIENDLY RESEARCHER POSTER SESSION AND OUR MEET & GREET, WITH A FAMILY FUN FEST. THE RESEARCHER AND CLINICAL CARE CONFERENCE CREATES OPEN COMMUNICATION OF EARLY, UNPUBLISHED SCIENTIFIC DATA, ACCELERATING THE PACE OF RESEARCH. THE MEETING ALSO FURTHERS RESEARCH BY BUILDING PRODUCTIVE COLLABORATIONSINCLUDING CROSS-DISCIPLINARY DIALOGUE, PARTNERSHIPS, INTEGRATION OF NEW RESEARCHERS AND DRUG COMPANIES, AND EDUCATIONAL OPPORTUNITIES FOR JUNIOR RESEARCHERS. COMMUNITY ATTENDEES HAVE DIRECT ACCESS TO THE LATEST INFORMATION ABOUT RESEARCH, AND RESEARCHERS HAVE AN OPPORTUNITY TO BUILD PERSONAL CONNECTIONS WITH THE PATIENTS WHO WILL BENEFIT FROM THEIR WORK.Expenses $588,940 · revenue $5,330,919
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in June, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | June 30, 2026 | November 16, 2026 | Not due yet |
| 2024 | June 30, 2025 | November 17, 2025 | 990 on file |
| 2023 | June 30, 2024 | November 15, 2024 | 990 on file |
IRS record
- EIN
- 36-3320440
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1985
- Accounting year ends
- June
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G110)
- Assets (IRS master file)
- $10,645,251
- Income (IRS master file)
- $16,238,049
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | June 2025 | $15,213,970 | $14,019,399 | $10,645,251 | XML |
| 990 | June 2024 | $14,785,235 | $15,621,865 | $10,703,968 | XML |
| 990 | June 2023 | $13,668,775 | $14,203,228 | $12,713,304 | IRS |
| 990 | June 2022 | – | – | – | IRS |
| 990 | June 2021 | – | – | – | IRS |
| 990 | June 2019 | – | – | – | IRS |
| 990 | June 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 36-3320440).
Questions about FAMILIES OF SMA
- What is the EIN of FAMILIES OF SMA?
- The employer identification number (EIN) of FAMILIES OF SMA is 36-3320440.
- Is FAMILIES OF SMA tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1985.
- Are donations to FAMILIES OF SMA tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does FAMILIES OF SMA file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of FAMILIES OF SMA due?
- The return for tax year 2025 (the year ending June 30, 2026) is due November 16, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did FAMILIES OF SMA last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended June 2025.
- Who is the principal officer of FAMILIES OF SMA?
- The 990 for the year ended June 30, 2025 names KENNETH HOBBY.
- Who are the officers and directors of FAMILIES OF SMA?
- The 990 for the year ended June 30, 2025 lists 36 people; 9 received compensation from the organization, the highest $329,195 (KENNETH HOBBY, PRESIDENT).
- How much revenue does FAMILIES OF SMA have?
- On its 990 for the year ended June 30, 2025 it reported revenue of $15,213,970, expenses of $14,019,399 and total assets of $10,645,251 at year end.
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All nonprofits in ELK GROVE VLG · Illinois · Voluntary health associations and medical disciplines