named programs · 4 · from sources
What they call their work
Huntington’s Disease Career Advancement Grant (HD-CAG)
An accelerator program for senior postdoctoral researchers, providing funding and mentorship to transition into independent research roles focused on HD.
Postdoctoral Fellowships
Supports promising early-career researchers in Huntington’s disease through funding and mentorship to cultivate long-term engagement in the field.
Research Partners Program
Engages major donors in funding innovative scientists and accelerating discoveries through significant philanthropic contributions.
Transformative Research Awards
Million-dollar grants awarded to collaborative research teams pursuing innovative approaches to understanding and treating Huntington’s disease at its genetic root.
activities · 7 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducting and supporting longitudinal research in VenezuelaConducted annual research expeditions from 1981 to 2002 to study the world’s largest family affected by Huntington’s disease, collecting clinical and biological data while providing medical care, which contributed to key genetic discoveries.
- Identifying genetic markers and isolating the Huntington's disease geneIdentified a genetic marker for Huntington’s disease in 1983 through research on the Venezuelan cohort and led the Gene Hunters collaborative that isolated the mutated HD gene in 1993.
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Genetic and Neurological Disease Research Funding 2 activities
- Funding early-career scientists through postdoctoral fellowshipsProvides two-year postdoctoral fellowships at $100,000 per year to support early-career scientists conducting research on Huntington's disease, including through the HD-CAG accelerator program.
- Funding transformative and collaborative research on Huntington's diseaseFunds transformative research projects and collaborative teams focused on understanding disease mechanisms and developing treatments for Huntington's disease, including million-dollar grants such as the Transformative Research Awards. Supports research that contributes to key discoveries in the field.
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Patient and Researcher Conferences 2 activities
- Hosting public research webinars on Huntington's diseaseHosts regular webinars featuring scientists discussing current research in accessible language and makes recordings available to the public via YouTube to increase public understanding of Huntington’s disease science.
- Organizing scientific conferences and research symposiaConvenes the Milton Wexler Biennial Symposium and interdisciplinary HDF workshops, bringing together over 300 experts, including early-career and senior researchers from academia and industry, to share discoveries and explore therapeutic approaches.
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Scientific Conference & Symposium Management 1 activity
- Organizing scientific conferences to advance research collaborationOrganizes scientific conferences that bring together experts to share discoveries, discuss new technologies, and form research collaborations aimed at advancing understanding and treatment of Huntington’s disease.
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Healthcare Professional Recognition Programs 1 activity
- Presenting awards to recognize scientific excellencePresents two annual awards to recognize extraordinary scientific contributions in the field of Huntington's disease research.
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Medical Research Funding 1 activity
- Providing seed grants for preliminary research dataAwards one-year $100,000 grants to senior researchers to generate preliminary data that supports future major funding applications.
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Research and Scholarly Fellowship Support 1 activity
- Supporting early-career researchers through mentorship and resourcesOperates the Young Investigators Program to provide mentorship, resources, and guidance to early-career scientists in the Huntington's disease research field.
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financials · form 990 · fy2025
revenue
Total revenue$4.08M
Contributions & grants$3.25M80%
Program service revenue$53K1%
Investment income$635K16%
Other revenue$140K
expenses
Total expenses$4.33M
Program expenses88%
Admin / overhead7%
Fundraising6%
Salaries & benefits$619K
Grants paid out$3.15M
Largest expense lineCompensation
balance sheet
Total assets$23.14M
Cash$1.73M
Investments$20.95M
Liabilities$2.31M
Net assets$20.82M
Liquid reserves62.9 mo
6 years on record · 2020–2025 · YoY revenue -48.3%
leadership · form 990 part vii · fy2025
Who runs it
paid leadership · 5
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| SARAH HERNANDEZ PHD | DIR. OF RESEARCH PROGRAMS | 40 | $217K |
| JULIE PORTER | DIR. OF ADMINISTRATION | 40 | $158K |
| KAREN NEWMAN | CHAIR | 24 | $72K |
| MEGHAN DONALDSON | CEO | 40 | $50K |
| TIM KELLEHER | CFO | 6 | $32K |
board members · 16
- ALICE WEXLER PHD — SECRETARY
- ANNE B YOUNG MD PHD — VICE CHAIR
- BERTA A GEHRY — DIRECTOR
- BRUCE DONALDSON — TREASURER
- C FRANK BENNETT PHD — DIRECTOR
- DAVID HOUSMAN PHD — DIRECTOR
- DAVID ZWALLY — DIRECTOR
- FRANK O GEHRY — DIRECTOR (THROUGH 12/5/25)
- LAUREN BAKER PINKUS — DIRECTOR
- LESLIE M THOMPSON PHD — DIRECTOR
- MELISSA MOSER — DIRECTOR
- NANCY S WEXLER PHD — PRESIDENT
- ROBI BLUMENSTEIN — DIRECTOR
- SANDY FOX — DIRECTOR
- TACIE FOX — DIRECTOR
- THOMAS OBERSTEINER — DIRECTOR (JOINED 4/25)
relationships · 39
Who they work with
- Blackbaud Merchant Services Government — Processes credit card donations for HDF with secure handling of financial and personal information.
- Columbia University Irving Medical Center Partner — Home institution of 2024 Transformative Research Award recipient Dr. Osama Al Dalahmah.
- Columbia University Medical Center Partner — Hosts HDF-funded researcher Katherine Croce, PhD
- Eli and Edythe L. Broad Institute of MIT and Harvard Partner — Hosts HDF-funded researcher Won-Seok Lee, PhD
- Floralis UGA Filiale Partner — Hosts HDF-funded researcher Marta Prieto García, PhD
- Frank Gehry Partner — Collaborated with HDF to create the Leslie Gehry Prize for Innovation in Science.
- FreeWill Partner — Partnered to provide a no-cost online tool for creating or updating estate plans.
- Gene Hunters Partner — Historic collaborative research group formed by HDF to isolate the Huntington's disease gene.
- HDBuzz Partner — Collaborates to provide accessible, high-quality research news and clinical trial data about Huntington's disease.
- Hospital for Sick Children Partner — Host institution for 2025 Transformative Research Award recipient Dr. Christopher Pearson.
- Huntington's Disease Foundation Network — Member of the Huntington's disease research and advocacy network
- Massachusetts General Hospital, Harvard Medical School Partner — Hosts HDF-funded researchers Kimberly Kegel-Gleason, PhD, Andrew Jiang, PhD, Shota Shibata, MD, PhD, and Sonia Vazquez-Sanchez, PhD
- Massachusetts Institute of Technology Partner — Hosts HDF-funded researchers David Housman, PhD, Chris Ng, PhD, and Francisco Garcia, PhD
- Mercer University Partner — Hosts HDF-funded researchers Seongwon Lee, PhD and Youngmi Oh, PhD
- National Institutes of Health Partner — Host institution for Dr. Jay Schneekloth, collaborator on the 2025 Transformative Research Award project.
- Northwestern University Partner — Hosts HDF-funded researcher Xiaojing Sui, PhD
- Scripps Research Institute Partner — Home institution of Dr. Jeffery Kelly, a recruited medicinal chemist on the 2025 Transformative Research Award project.
- Sorbonne University Partner — Hosts HDF-funded researcher Christian Neri, PhD
- Stanford University Partner — Hosts HDF-funded researchers Ivana Vujkovic Bukvin, PhD, Takeshi Uenaka, MD, PhD, and Piere Rodriguez-Aliaga, PhD
- The Children’s Hospital of Philadelphia Partner — Hosts HDF-funded researcher Icnelia Huerta Ocampo, MD, PhD
- The Hospital for Sick Children (SickKids) Partner — Hosts HDF-funded researcher Amit Laxmikant Deshmukh, PhD
- Thomas Jefferson University Partner — Hosts HDF-funded researcher Anna Pluciennik, PhD
- University of Auckland Partner — Hosts HDF-funded researcher Chris Kay, PhD
- University of Barcelona, Spain Partner — Hosts HDF-funded researcher Verónica Inés Brito, PhD
- University of British Columbia Partner — Hosts HDF-funded researcher Lynn A. Raymond, PhD, MD
- University of California, Irvine Partner — Hosts HDF-funded researcher Charlene Smith, PhD and HD-CAG recipient Devon Pendlebury, PhD
- University of California, Los Angeles Partner — Hosts HDF-funded researcher Vanessa H. Casha, PhD
- University of California, San Diego Partner — Hosts HDF-funded researcher Sonja Blumenstock, PhD
- University of Florida Partner — Hosts HDF-funded researcher Eric T. Wang, PhD
- University of Melbourne Partner — Hosts HDF-funded researcher Christian Makhoul, PhD
+ 9 more
strategies · 2
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Science Modelmethodology: collaborative_scienceBy convening researchers, institutions, and stakeholders through workshops, conferences, and interdisciplinary collaboration, we accelerate scientific progress because collective intelligence and cross-pollination of ideas lead to faster breakthroughs in understanding and treating Huntington's disease.
- Strategic Research Funding with Leverage and Incubationmethodology: research_funding_leverageBy providing seed funding to early-career researchers and high-impact, innovative projects, we generate preliminary data and scientific momentum that enables researchers to secure larger grants and sustain long-term engagement, because early support de-risks future investment and builds field capacity.