Huntington's Disease Society of America Inc
Huntington’s Disease Society is a New York, New York-based public charity that supports research, patient and family services, community outreach, and education related to Huntington’s disease. Its programs include competitive research funding and services such as counseling and referrals for patients and families.
Key facts about Huntington's Disease Society of America Inc
In short: Huntington's Disease Society of America Inc gave $2.1M across 65 grants in 2025 (avg $32K), top state Massachusetts. 2% of 2025 grantees were new. Source: 2025 IRS Form 990.
- EIN
- 13-3349872
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $2,070,500
- Grants made (2025)
- 65
- Average grant
- $31,854
- Median grant
- $28,000
- New grantees (estimate)
- 2% first-time grantees (1 of 63, 2025)
- Total assets
- $17,930,550
- Primary geography
- Massachusetts (13% of itemized 2025 grant dollars)
- Deadline
- For the 2026 Human Biology Project and Human Experience Project RFP, Letters of Intent are due May 22, 2026; invited…
Data from IRS Form 990, 2025; updated September 2026. New grantees are estimated by matching recipient names across years (methodology). 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
$17.9M
+3.9% YoY
Annual Giving
$2.1M
-31.4% YoY
Grant Count
65
-3.0% YoY
Avg Grant Size
$32K
-29.2% YoY
Is Huntington's Disease Society of America Inc open to new grantees?
2%
first-time grantees, 2025
In 2025, 1 of 63 grantees (2%) were first-time recipients. First grants averaged $100K; repeat grants $32K. How we count
Medians: $100K first-time, $28K repeat.
- 98% of 2025 grantees were also funded in 2024. Method
- Giving held roughly steady from 2022 to 2025 (−12%). Method
Estimate from itemized grant lists in IRS Form 990 filings (2019–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Mission & Focus Areas
The organization’s mission is to improve the lives of everyone impacted by Huntington’s disease by providing support, driving advocacy, and accelerating research. Its stated activities include supporting research advised by its Scientific Advisory Board; providing counseling and referral services to patients and families; offering workshops, seminars, and symposiums through a network of U.S. chapter affiliates and branches; and distributing educational materials.
Its grantmaking supports research and community services. For example, 2025 grants included research funding for the Regents of the University of Michigan and community-services funding for institutions including Massachusetts General Hospital and the University of Washington. Among 2024 recipients, the Trustees of the University of Pennsylvania described its own mission as including research and patient care; Rush University Medical Center described its mission as improving health through patient care, education, research, and community partnerships; and Johns Hopkins University described its mission as including education, research, and bringing the benefits of discovery to the world.
Grantmaking
In filing year 2025, the organization reported 65 grants totaling $2,070,500. Grant amounts ranged from $9,000 to $100,000, with a median of $28,000. Its largest listed award was $100,000 for research to the Regents of the University of Michigan. Other notable awards included $90,000 each to Massachusetts General Hospital for research and for community services, and $60,500 to the Regents of the University of California Davis Health for community services.
The organization describes several competitive research programs. The HD Human Biology Project supports research into Huntington’s disease biology in humans; its program page describes awards of up to $150,000 over two years. The Berman-Topper Family HD Career Development Fellowship provides up to $80,000 per year for a postdoctoral researcher planning a career in Huntington’s disease research. The Donald A. King Summer Research Fellowship provides $4,500 for an undergraduate summer research experience in an established Huntington’s disease laboratory.
For its 2026 Request for Proposals, HDSA introduced Human Biology and Human Experience funding streams. The Human Biology stream focuses on clinical samples or patient data and research relevant to therapeutic development or patient care. The Human Experience stream focuses on the lived experience of Huntington’s disease, including cognition, behavior, function, quality of life, and care. Applicants select a stream when submitting a Letter of Intent; full proposals are by invitation. The 2026 RFP lists a Letter of Intent deadline of May 22, 2026, a full proposal deadline of July 24, 2026, and award notification in October 2026. The project start date is no later than December 1, 2026.
Review Cycle
For the 2026 Human Biology Project and Human Experience Project RFP, Letters of Intent are due May 22, 2026; invited full proposals are due July 24, 2026.
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Geographic Focus
Where this funder awards grants
The organization’s 2025 grants went to recipients in multiple states. The largest reported shares of grant dollars by recipient state were Massachusetts (13%), California (10%), New York (7%), Michigan (6%), and Ohio (5%). Its 2025 Human Biology Project announcement says researchers from around the world may apply and may work with an HD clinic anywhere in the world.
Grant Distribution by State
Share of 2025 grant dollars across all 65 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2025, annual grant giving ranged from $1.6M (2019) to $3.0M (2024). In 2025 it made 65 grants totaling $2.1M.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was Massachusetts General Hospital ($208K across 3 grants). Together the top 10 received $685K.
Grant Size Distribution
324 grants across all recorded years
The most common grant size was under $50K: 282 grants of 324 (87%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Regents of the University of Michigan Ann Arbor, MI | Research | $100,000 |
| Massachusetts General Hospital Boston, MA | Research | $90,000 |
| Massachusetts General Hospital Boston, MA | Community Services | $90,000 |
| Regents of the University of California Davis Health Sacramento, CA | Community Services | $60,500 |
| Univ of Washington Seattle, WA | Community Services | $50,000 |
| University of Texas Health Science Center Houston, TX | Community Services | $47,000 |
| Trustees of the University of Pennsylvania Philadelphia, PA | Community Services | $46,500 |
| Vanderbilt University Medical Center Nashville, TN | Community Services | $45,000 |
| Ohio State University Wexner Medical Center Columbus, OH | Community Services | $42,750 |
| University of South Florida Tampa, FL | Community Services | $42,750 |
Financial History
Multi-year comparison from IRS filings
| Filing year | Assets | Revenue | Expenses | Grants |
|---|---|---|---|---|
| 2025 | $17,930,550 | $11,232,523 | $9,444,908 | $2,070,500 |
| 2024 | $17,255,243 | $10,174,088 | $11,385,673 | $3,016,159 |
| 2023 | $18,147,360 | $9,833,936 | $11,157,448 | $2,966,938 |
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $17,930,550 | $17,255,243 | $18,147,360 |
| Revenue | $11,232,523 | $10,174,088 | $9,833,936 |
| Expenses | $9,444,908 | $11,385,673 | $11,157,448 |
| Net Investment Income | $278,265 | $204,685 | $148,302 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS July 16, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS September 12, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 16, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 12, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 28, 2025)
- Added Form 990 for fiscal year 2019 (received by the IRS June 26, 2020)
- Added Form 990 for fiscal year 2025 (received by the IRS June 24, 2026)
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Leadership team and compensation from IRS filings
Officers and directors listed on the 2025 filing include Jenne Coler-Dark, Chair; Angela Allen, Chair Elect; Teresa Srajer, Past Chair; Jay Hughes, Secretary; and Christopher DeCesaris, Treasurer. Listed trustees are Jeffrey Brown, Mark Coe, Erin Furr-Stimming MD, Beth Hoffman, and Jonathan Klein Esq.
Huntington's Disease Society of America Inc is led by Amy Gray, Chief Executive Officer on the 2025 filing; 8 of 22 officers listed in 2025 are compensated.
Officers on the 2025 filing
Amy Gray
Chief Executive Officer
New on the 2025 filing
35 hrs/week
$334K (2025)
Jenne Coler-Dark
Chair
Secretary → Chair Elect, 2023
Chair Elect → Chair, 2025
On filings since 2019
6 hrs/week
No compensation reported
Deborah Boyd
Regional Development Director
On filings since 2021
35 hrs/week
$108K (2021) → $135K (2025)
Mynelly Perez-Orellana
Director, Marketing & Communications
New on the 2025 filing
35 hrs/week
$123K (2025)
Jonathan Klein Esq.
Trustee
On filings since 2020
6 hrs/week
No compensation reported
Dominique Thomas
Trustee
On filings since 2021
6 hrs/week
No compensation reported
Erin Furr-Stimming MD
Trustee
On filings since 2021
6 hrs/week
No compensation reported
Mark Coe
Trustee
On filings since 2021
6 hrs/week
No compensation reported
Beth Hoffman
Trustee
On filings since 2022
6 hrs/week
No compensation reported
Jeffrey Brown
Trustee
On filings since 2023
6 hrs/week
No compensation reported
Amber Southwell PhD
Trustee
On filings since 2024
6 hrs/week
No compensation reported
Jaime Hatcher-Martin MD
Trustee
New on the 2025 filing
6 hrs/week
No compensation reported
Mara Sifry
Trustee
New on the 2025 filing
6 hrs/week
No compensation reported
Rosemary Coluccio
Chief Operations Officer
Chief Operating Officer → Chief Operations Officer, 2021
On filings since 2019
35 hrs/week
$173K (2019) → $176K (2025)
Arik Johnson
Chief Mission Officer
On filings since 2022
35 hrs/week
$195K (2022) → $237K (2025)
Rebecca Chan
Controller
On filings since 2022
35 hrs/week
$107K (2022) → $156K (2025)
Jessica Marsolek
Assistant Director & Mission Programs
On filings since 2024
35 hrs/week
$112K (2024) → $120K (2025)
Melinda Jensen
Regional Development Officer & Ne Region
New on the 2025 filing
35 hrs/week
$109K (2025)
Teresa Srajer
Past Chair
Chair-Elect → Chair, 2023
Chair → Past Chair, 2025
On filings since 2019
6 hrs/week
No compensation reported
Jay Hughes
Secretary
Trustee → Secretary, 2023
On filings since 2020
6 hrs/week
No compensation reported
Angela Allen
Chair Elect
Trustee → Treasurer, 2024
Treasurer → Chair Elect, 2025
On filings since 2021
6 hrs/week
No compensation reported
Christopher Decesaris
Treasurer
Trustee → Treasurer, 2025
On filings since 2024
6 hrs/week
No compensation reported
Former officers (23)
- Former: Jamison Skala (2019–2024) — Director & National Development
- Former: Kamran Alam (2019–2024) — Trustee
- Former: Leslie M. Thompson PhD (2019–2024) — Trustee
- Former: Louise Vetter (2019–2024) — Chief Executive Officer
- Former: Vicki Wheelock MD (2019–2024) — Trustee
- Former: Victor Sung MD (2019–2024) — Past Chair
- Former: Kelsey Porter (2021–2024) — Trustee
- Former: Jeff Carroll (2022–2024) — Trustee
- Former: Nichole Mendoza (2024) — Regional Development Officer Pacific West
- Former: Debra Lovecky (2019–2023) — Director of Education Program
- Former: Christopher Cosentino (2019–2022) — Director of Marketing
- Former: Daniel Brennan (2019–2022) — Trustee
- Former: Ej Garner (2019–2022) — Past Chair
- Former: Stacy Coen (2019–2022) — Trustee
- Former: Wendy Erler (2020–2022) — Trustee
- Former: George Yohrling (2019–2021) — Chief Mission & Sci. Affairs
- Former: Arik Johnson Psyd (2019–2020) — Past Chair
- Former: Daniel Vandivort (2019–2020) — Trustee
- Former: Donald Higgins MD (2019–2020) — Trustee
- Former: Nancy Rhodes (2019–2020) — Director of Field Development & Oper.
- Former: Bill Kline (2019) — Trustee
- Former: Gerald A. Francese Es (2019) — Trustee
- Former: Jennifer Leyton (2019) — Secretary
Data from IRS Form 990 filings, 2019–2025. "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 $334K, to Amy Gray (Chief Executive Officer). 8 officers or directors reported compensation on that filing.
Contact
Mailing address: 505 Eighth Avenue Suite 1402, New York, NY 10018
Phone: (212) 242-1968
Website: https://hdsa.org
Frequently asked questions about Huntington's Disease Society of America Inc
How much does Huntington's Disease Society of America Inc give each year?
Huntington's Disease Society of America Inc gave $2.1M across 65 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $3.0M across 67 grants.
What is Huntington's Disease Society of America Inc's typical grant size?
Huntington's Disease Society of America Inc's median grant in 2025 was $28,000, and its average grant was $31,854, across 65 grants on its 2025 IRS Form 990. Organizations receiving their first grant from Huntington's Disease Society of America Inc that year got $100K on average.
Where does Huntington's Disease Society of America Inc give grants?
Huntington's Disease Society of America Inc's top state is Massachusetts, with 13% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were California (10%) and New York (7%). The most frequent recipient cities were Boston, MA (3 grants), Chicago, IL (2 grants), Los Angeles, CA (2 grants) and Atlanta, GA (2 grants).
Does Huntington's Disease Society of America Inc give general operating support?
Not in 2025: none of the 65 grants with a stated purpose on Huntington's Disease Society of America Inc's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Community Services" (62 grants) and "Research" (3 grants).
Who are Huntington's Disease Society of America Inc's largest grantees?
Huntington's Disease Society of America Inc's largest 2025 grantees include Massachusetts General Hospital ($208,000 across 3 grants), Regents of the University of Michigan ($100,000) and Regents of the University of California Davis Health ($60,500), according to its 2025 IRS Form 990. Together they received 18% of its itemized 2025 grant dollars.
How large is Huntington's Disease Society of America Inc?
Huntington's Disease Society of America Inc reported $17.9M in total assets on its 2025 IRS Form 990. Its revenue that year was $11.2M.
What does Huntington's Disease Society of America Inc fund?
The organization’s mission is to improve the lives of everyone impacted by Huntington’s disease by providing support, driving advocacy, and accelerating research. See mission & focus areas ↑
How do I apply for a grant from Huntington's Disease Society of America Inc?
Huntington's Disease Society of America Inc has no public application process in the sources Grantable reviewed. Check hdsa.org for current guidelines, or contact the foundation directly before submitting a request.
What is Huntington's Disease Society of America Inc's EIN?
Huntington's Disease Society of America Inc's EIN (Employer Identification Number) is 13-3349872. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Here's the math on researching Huntington's Disease Society of America Inc by hand.
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