Families of Spinal Muscular Atrophy DBA Cure Sma
Families of Spinal Muscular Atrophy, doing business as Cure SMA, is a public charity based in Schaumburg, Illinois. Founded in 1984, it supports research into spinal muscular atrophy (SMA) and provides information, resources, and other support to people with SMA and their families.
Key facts about Families of Spinal Muscular Atrophy DBA Cure Sma
In short: Families of Spinal Muscular Atrophy DBA Cure Sma gave $1.8M across 9 grants in 2025 (avg $200K), top state New York. Source: 2025 IRS Form 990.
- EIN
- 36-3320440
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $1,802,574
- Grants made (2025)
- 9
- Average grant
- $200,286
- Median grant
- $230,000
- Total assets
- $10,645,251
- Primary geography
- New York (30% of itemized 2025 grant dollars)
- Deadline
- The 2026 basic research RFP listed a September 4, 2026 submission deadline; that deadline has passed.
Data from IRS Form 990, 2025; updated October 2026. Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$10.6M
-0.5% YoY
Annual Giving
$1.8M
+17.1% YoY
Grant Count
9
-67.9% YoY
Avg Grant Size
$200K
+264.4% YoY
How Families of Spinal Muscular Atrophy DBA Cure Sma gives
- Giving fell 21% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
Mission & Focus Areas
Cure SMA states its mission is “to drive research for treatments and a cure for SMA, and to support and empower everyone impacted by SMA today.” The organization describes three interdependent research areas: basic research into SMA’s causes and biology; drug discovery to develop practical drug candidates; and clinical and regulatory research to provide infrastructure for testing candidates.
Its basic research priorities include understanding SMA pathology, developing tools to support drug development and clinical trials, and identifying therapeutic strategies. The organization also reports supporting research infrastructure and readiness, collecting and analyzing patient and clinical data, and convening researchers, clinicians, families, and others in the SMA community.
In 2025, Cure SMA’s grants included support for children’s hospitals, universities, and other research institutions. The grantee descriptions characterize Columbia University as a higher-education and research institution with a medical center; the University of Rochester as providing higher education, research, and charitable patient care; Case Western Reserve University as a research-oriented university with strengths including health and engineering; and the Medical College of Wisconsin as an educator and developer of physicians.
Grantmaking
In filing year 2025, Cure SMA reported 9 grants totaling $1,802,574. Grant amounts ranged from $915 to $346,620, with a median of $230,000. The largest awards were $346,620 to Boston Children’s Hospital for “PNCR Network & Basic Research,” $307,490 to Ann & Robert H. Lurie Children’s Hospital of Chicago for the same stated purpose, and $306,885 to the Trustees of Columbia University in the City of New York for the same purpose. Other large grants included $252,500 to Leland Stanford Junior University for “PNCR Network,” $230,000 to the University of Rochester for “PNCR Network,” and $164,300 to Children’s Hospital of Philadelphia for “PNCR Network.”
Cure SMA’s website describes a competitive review process for basic research proposals, with evaluation by its Scientific Advisory Board based on scientific quality and relevance to its research mission. Its 2026 basic research RFP invited applications for research projects and postdoctoral fellowships and stated that postdoctoral applicants must include a supervisor’s letter of support. Cure SMA also says approved grantees must submit progress reports before additional funding is authorized. The filing describes committee review of grant applications based on the qualifications of the institution and researcher, the research project, and its potential applicability to SMA.
Review Cycle
The 2026 basic research RFP listed a September 4, 2026 submission deadline; that deadline has passed.
Open Grants
2 open opportunities from Families of Spinal Muscular Atrophy DBA Cure Sma
Ready to take the next step with Families of Spinal Muscular Atrophy DBA Cure Sma?
Geographic Focus
Where this funder awards grants
The 2025 grant-dollar distribution was reported as 30% to New York, 25% to Illinois, 19% to Massachusetts, 14% to California, and 9% to Pennsylvania. The listed 2025 grantees were located in those states as well as Ohio and Wisconsin.
Grant Distribution by State
Share of 2025 grant dollars across all 9 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2025, annual grant giving ranged from $1.5M (2024) to $2.4M (2023). In 2025 it made 9 grants totaling $1.8M.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2025
The largest 2025 recipient was Boston Children's Hospital ($347K). Together the top 9 received $1.8M.
Grant Size Distribution
120 grants across all recorded years
The most common grant size was under $50K: 69 grants of 120 (57%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Boston Children's Hospital Boston, MA | PNCR Network & Basic Research | $346,620 |
| Ann & Robert H Lurie Children's Hospital of Chicago Chicago, IL | PNCR Network & Basic Research | $307,490 |
| Trustees of Columbia University - NYC New York, NY | PNCR Network & Basic Research | $306,885 |
| Leland Stanford Junior University Stanford, CA | PNCR Network | $252,500 |
| University of Rochester Rochester, NY | PNCR Network | $230,000 |
| Children's Hospital of Philadelphia Philadelphia, PA | PNCR Network | $164,300 |
| John Hopkins University Chicago, IL | Basic Research | $149,695 |
| Case Western University Cleveland, OH | Basic Research | $44,169 |
| Medical College of Wisconsin Milwaukee, WI | Basic Research | $915 |
Financial History
Multi-year comparison from IRS filings
| Filing year | Assets | Revenue | Expenses | Grants |
|---|---|---|---|---|
| 2025 | $10,645,251 | $15,213,970 | $14,019,399 | $1,802,574 |
| 2024 | $10,703,968 | $14,785,235 | $15,621,865 | $1,539,076 |
| 2023 | $12,713,304 | $13,668,775 | $14,203,228 | $2,372,768 |
Filing type: Form 990 (a public charity).
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $10,645,251 | $10,703,968 | $12,713,304 |
| Revenue | $15,213,970 | $14,785,235 | $13,668,775 |
| Expenses | $14,019,399 | $15,621,865 | $14,203,228 |
| Net Investment Income | $209,381 | $133,015 | $85,789 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2021 (received by the IRS November 4, 2021)
- Updated Form 990 for fiscal year 2022 (received by the IRS October 18, 2022)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS November 14, 2024)
- Updated Form 990 for fiscal year 2025 (received by the IRS November 12, 2025)
- IRS filings on file for fiscal years 2021–2025
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists the following directors: Robert Graham, Peter Statile, Mark Moore, Marc Ginsky, Karen McRoy-Negrin, Bakri Elsheikh, Joe Wiseman, Rob Lockwood, Kelly Jankowski, and Amy Medina.
Families of Spinal Muscular Atrophy DBA Cure Sma is led by Kenneth Hobby, President on every filing since 2021; 9 of 36 officers listed in 2025 are compensated.
Officers on the 2025 filing
Kenneth Hobby
President
On filings since 2021
70 hrs/week
$328K (2021) → $329K (2025)
Nick Farrell
Board Chair
On filings since 2021
5 hrs/week
No compensation reported
Allyson Henkel
Director
On filings since 2021
2 hrs/week
No compensation reported
Amy Medina
Director
On filings since 2021
2 hrs/week
No compensation reported
Corey Braastad
Director
On filings since 2021
2 hrs/week
No compensation reported
Edmund Lee
Director
On filings since 2021
2 hrs/week
No compensation reported
Gillian Mullins
Director
Secretary → Director, 2024
On filings since 2021
2 hrs/week
No compensation reported
Jaclyn Greenwood
Director
On filings since 2021
2 hrs/week
No compensation reported
Kelly Jankowski
Director
On filings since 2021
2 hrs/week
No compensation reported
Peter Statile
Director
Treasurer → Director, 2022
On filings since 2021
2 hrs/week
No compensation reported
Rob Lockwood
Director
On filings since 2021
2 hrs/week
No compensation reported
Robert Graham
Director
On filings since 2021
2 hrs/week
No compensation reported
Shannon Zerzan
Director
On filings since 2021
5 hrs/week
No compensation reported
Spencer Perlman
Director
On filings since 2021
2 hrs/week
No compensation reported
Brian Snyder
Director
On filings since 2022
2 hrs/week
No compensation reported
Bakri Elsheikh
Director
On filings since 2023
2 hrs/week
No compensation reported
Diana Castro
Director
On filings since 2023
2 hrs/week
No compensation reported
Kaleen Robinson
Director
On filings since 2023
2 hrs/week
No compensation reported
Brianna Gross
Director
On filings since 2024
2 hrs/week
No compensation reported
Joe Wiseman
Director
On filings since 2024
2 hrs/week
No compensation reported
Karen McRoy-Negrin
Director
On filings since 2024
2 hrs/week
No compensation reported
Marc Ginsky
Director
On filings since 2024
2 hrs/week
No compensation reported
Mark Moore
Director
On filings since 2024
2 hrs/week
No compensation reported
Collin Pollock
Director
New on the 2025 filing
2 hrs/week
No compensation reported
John Weber
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Rachel Brown
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Tyler Dukes
Director
New on the 2025 filing
2 hrs/week
No compensation reported
Colleen McCarthy O'Toole
Senior Vice President & Communications
Vice President & Family Support → Senior Vice President & Community Support, 2023
Senior Vice President & Community Support → Senior Vice President & Communications, 2024
On filings since 2021
60 hrs/week
$153K (2021) → $175K (2025)
Marline Pagan
Chief Operating Officer
Vice President & Finance → Chief Operating Officer, 2023
On filings since 2021
60 hrs/week
$157K (2021) → $209K (2025)
Mary Schroth
Chief Medical Officer
On filings since 2021
60 hrs/week
$267K (2021) → $218K (2025)
Maynard Friesz
Vice President & Policy
Vice President, Policy & Advocacy → Vice President, Policy & A, 2022
Vice President, Policy & A → Vice President & Policy, 2024
On filings since 2021
50 hrs/week
$117K (2021) → $150K (2025)
Jackie Glascock
Vice President of Research
On filings since 2023
50 hrs/week
$123K (2023) → $146K (2025)
Jamie Gibson
Chief Development Officer
On filings since 2024
60 hrs/week
$143K (2024) → $266K (2025)
Jesse Aynes
Vice President of Development
New on the 2025 filing
50 hrs/week
$135K (2025)
Mary Curry
Vice President, Clinical Research & Care
New on the 2025 filing
50 hrs/week
$138K (2025)
Bradley A. Nunemaker
Treasurer & Vice Chair
New on the 2025 filing
5 hrs/week
No compensation reported
Former officers (16)
- Former: Brad Nunemaker (2021–2024) — Treasurer & Vice Chair
- Former: Tom Murray (2021–2024) — Director
- Former: Amy Thomasson (2024) — Vice President, Marketing & Communications
- Former: Annie Kennedy (2021–2023) — Director
- Former: Kelly Cole (2021–2023) — Director
- Former: Shannon Shryne (2021–2023) — Director
- Former: Pamela Swenk (2022–2023) — Chief of Staff Officer
- Former: Michelle Castle (2023) — Vice President of Compliance Development
- Former: Erin Oganesian (2021–2022) — Vice President & Development
- Former: Jill Jarecki (2021–2022) — Chief Scientific Officer
- Former: Matt Evans (2021–2022) — Director
- Former: Amber Ewert Snyder (2022) — Senior Director Database Management
- Former: Brain Snyder (2021) — Director
- Former: Douglas Kerr (2021) — Director
- Former: Leslie Humbel (2021) — Senior Director Marketing & Communications
- Former: Richard M. Rubenstein (2021) — Board Chair
Data from IRS Form 990 filings, 2021–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $329K, to Kenneth Hobby (President). 9 officers or directors reported compensation on that filing.
Contact
Mailing address: 50 E Commerce Dr 90, Schaumburg, IL 60173
Phone: (847) 709-6318
Website: https://curesma.org
Frequently asked questions about Families of Spinal Muscular Atrophy DBA Cure Sma
How much does Families of Spinal Muscular Atrophy DBA Cure Sma give each year?
Families of Spinal Muscular Atrophy DBA Cure Sma gave $1.8M across 9 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $1.5M across 28 grants.
What is Families of Spinal Muscular Atrophy DBA Cure Sma's typical grant size?
Families of Spinal Muscular Atrophy DBA Cure Sma's median grant in 2025 was $230,000, and its average grant was $200,286, across 9 grants on its 2025 IRS Form 990.
Where does Families of Spinal Muscular Atrophy DBA Cure Sma give grants?
Families of Spinal Muscular Atrophy DBA Cure Sma's top state is New York, with 30% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Illinois (25%) and Massachusetts (19%). The most frequent recipient cities were Chicago, IL (2 grants).
Does Families of Spinal Muscular Atrophy DBA Cure Sma give general operating support?
Not in 2025: none of the 9 grants with a stated purpose on Families of Spinal Muscular Atrophy DBA Cure Sma's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "PNCR Network" (3 grants), "PNCR Network & Basic Research" (3 grants) and "Basic Research" (3 grants).
Who are Families of Spinal Muscular Atrophy DBA Cure Sma's largest grantees?
Families of Spinal Muscular Atrophy DBA Cure Sma's largest 2025 grantees include Boston Children's Hospital ($346,620), Ann & Robert H Lurie Children's Hospital of Chicago ($307,490) and Trustees of Columbia University - NYC ($306,885), according to its 2025 IRS Form 990. Together they received 53% of its itemized 2025 grant dollars.
How large is Families of Spinal Muscular Atrophy DBA Cure Sma?
Families of Spinal Muscular Atrophy DBA Cure Sma reported $10.6M in total assets on its 2025 IRS Form 990. Its revenue that year was $15.2M.
What does Families of Spinal Muscular Atrophy DBA Cure Sma fund?
Cure SMA states its mission is “to drive research for treatments and a cure for SMA, and to support and empower everyone impacted by SMA today.” See mission & focus areas ↑
How do I apply for a grant from Families of Spinal Muscular Atrophy DBA Cure Sma?
Families of Spinal Muscular Atrophy DBA Cure Sma has no public application process in the sources Grantable reviewed. Check curesma.org for current guidelines, or contact the foundation directly before submitting a request.
What is Families of Spinal Muscular Atrophy DBA Cure Sma's EIN?
Families of Spinal Muscular Atrophy DBA Cure Sma's EIN (Employer Identification Number) is 36-3320440. IRS Form 990 filing data is available on this page for 2021–2025.
Data last updated October 2026. Sourced from IRS Form 990 filings. Research dossier generated October 2026.
Here's the math on researching Families of Spinal Muscular Atrophy DBA Cure Sma by hand.
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