irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $3.24MPATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.
- #2 $826KCOMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES.
named programs · 3 · from sources
What they call their work
Community Outreach
Offers workshops, seminars, and symposiums on Huntington's disease through a network of chapter affiliates and branches across the U.S.
Educational Publications
Produces and distributes comprehensive guides on HD management, caregiving, genetics, and clinical care for families and medical professionals
Patient and Family Services
Provides counseling and referral services to patients with Huntington's disease and their families
activities · 5 groups
What they do
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Rare Genetic Disease Research and Advocacy 3 activities
- Advocate for accelerated treatment developmentAdvocates for regulatory flexibility in clinical trial design to speed up the development of treatments for Huntington’s disease while preserving scientific rigor, and organizes awareness and fundraising campaigns to influence policy and public engagement.
- Conduct patient-centered research and surveysConducts surveys such as the 2024 HD Symptoms and Treatment Impact Survey and an online study gathering patient and caregiver input on drug development innovation to inform regulatory and research priorities.
- Support global HD research infrastructureSupports ENROLL-HD, a global research initiative that collects health data from tens of thousands of families to build the largest Huntington’s disease database, and participates in multiple clinical trials to advance treatment options.
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Genetic and Neurological Disease Research Funding 3 activities
- Award research fellowships and career development grantsFunds undergraduate and early-career researchers through the Donald A. King Summer Research Fellowship and the Berman-Topper Family HD Career Development Fellowship to advance scientific training and research in Huntington’s disease.
- Fund and support HDSA Centers of ExcellenceAwards grants to maintain and expand the HDSA Centers of Excellence network, which delivers expert Huntington’s disease care across 37 states and Washington, DC; supported expansion from 20 sites in 2015 to 69 grant-funded sites by 2025.
- Fund patient-focused research and therapeutic developmentAwards research grants to support human studies investigating Huntington’s disease, including initiatives like the HD Human Biology Project, to accelerate understanding of disease biology and therapeutic development.
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Disease-Specific Clinical & Patient Education 3 activities
- Deliver professional education and capacity buildingProvides online courses and reference materials in video and PDF formats for healthcare professionals including physicians, social workers, and therapists on cognitive, physical, legal, and therapeutic aspects of Huntington’s disease care.
- Provide community support services and educationOffers counseling, care navigation, resource access, psychosocial support, and operates free support groups for individuals and families affected by Huntington's disease. Provides educational programs through a network of chapter affiliates and conducts national workshops and seminars.
- Publish educational and clinical guidance materialsProduces and distributes comprehensive guides on various aspects of Huntington’s disease including behavior management, communication with healthcare providers, long-term care, mid-to-late stage caregiving, juvenile HD, speech and swallowing, nutrition, and age-appropriate communication with children. Also publishes clinical resources such as the Physician’s Guide to HD management.
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Annual Impact and Evaluation Reporting 1 activity
- Publish annual research advancements reportProduces and publishes The Marker, an annual report detailing HDSA-supported research and scientific progress in Huntington’s disease.
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Nonprofit Capacity Building Services 1 activity
- Strengthen organizational infrastructureHires nonprofit leaders with financial and operational expertise and strengthens internal systems to support the expansion of services, research funding, and advocacy efforts for families affected by Huntington’s disease.
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financials · form 990 · fy2024
revenue
Total revenue$10.17M
Contributions & grants$9.82M97%
Program service revenue$00%
Investment income$205K2%
Other revenue$146K
expenses
Total expenses$11.39M
Program expenses75%
Admin / overhead8%
Fundraising17%
Salaries & benefits$4.30M
Grants paid out$3.37M
Largest expense lineCompensation
balance sheet
Total assets$17.26M
Cash$6.83M
Investments$5.50M
Liabilities$4.61M
Net assets$12.64M
Liquid reserves13.0 mo
5 years on record · 2020–2024 · YoY revenue +3.5%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 8
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFFICER | 35 | $318K |
| LOUISE VETTER | CHIEF EXECUTIVE OFF (THRU 7/12/2024) | 35 | $316K |
| ARIK JOHNSON | CHIEF MISSION OFFICER | 35 | $233K |
| JAMISON SKALA | DIRECTOR, NATIONAL DEVELOPMENT | 35 | $204K |
| REBECCA CHAN | CONTROLLER | 35 | $165K |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR | 35 | $143K |
| JESSICA MARSOLEK | ASSISTANT DIRECTOR, MISSION PROGRAMS | 35 | $132K |
| NICHOLE MENDOZA | REGIONAL DEVELOPMENT OFFICER PACIFIC WEST | 35 | $124K |
board members · 17
- AMBER SOUTHWELL PHD — TRUSTEE
- ANGELA ALLEN — TREASURER
- BETH HOFFMAN — TRUSTEE
- CHRISTOPHER DECESARIS — TRUSTEE
- DOMINIQUE THOMAS — TRUSTEE
- ERIN FURR-STIMMING MD — TRUSTEE
- JAY HUGHES — SECRETARY
- JEFF CARROLL — TRUSTEE
- JEFFREY BROWN — TRUSTEE
- JENNE COLER-DARK — CHAIR ELECT
- JONATHAN KLEIN ESQ — TRUSTEE
- KAMRAN ALAM — TRUSTEE
- KELSEY PORTER — TRUSTEE (THRU 6/2024)
- LESLIE M THOMPSON PHD — TRUSTEE
- MARK COE — TRUSTEE
- TERESA SRAJER — CHAIR
- VICKI WHEELOCK MD — TRUSTEE
relationships · 33
Who they work with
- Adam Rosenblatt, MD Partner — Co-author of "A Physician’s Guide to the Management of Huntington’s Disease"
- American Liver Foundation Partner — David Ticker previously served as Executive Vice President and Chief Financial Officer at the American Liver Foundation, bringing cross-sector nonprofit leadership experience to HDSA.
- Amy Gray Partner — President & CEO of HDSA, collaborates on leadership and organizational strategy
- Arelis E. Martir-Negron, M.D. Partner — Spanish translator of multiple HDSA Family Guide Series publications
- Arik C. Johnson, Psy.D. Partner — Co-author of "Understanding Behavior in Huntington’s Disease: A Guide for Professionals"
- Chapter Affiliates and Branches Network — Network of local chapters and branches delivering community outreach and educational programming on Huntington's disease.
- Columbia University Irving Medical Center Partner — Host institution for a 2026 Donald A. King Summer Research Fellow.
- Ferrer Partner — Collaborates on research initiatives related to pridopidine in Huntington's disease.
- Food and Drug Administration Government — Advocates for the FDA to allow AMT-130 to proceed to a science-driven review.
- George H. W. Bush Government — Issued a presidential proclamation in 1992 recognizing Huntington’s Disease Awareness Month.
- Griffin Foundation Funder — Provided financial support for the 2024 HDSA Centers of Excellence program.
- HDBuzz Partner — Partners with HDBuzz to communicate scientific updates about Huntington's disease research to the public.
- HDSA Los Angeles Chapter Network — Local chapter of HDSA where Hiren Patel served as President from 2019 to 2024.
- Hereditary Disease Foundation Partner — Collaborated with the Hereditary Disease Foundation at the Milton Wexler Biennial Symposium.
- Huntington’s Disease Society of America Network — Primary organization providing coordinated services and support for Huntington's disease at national level
- Jane S. Paulsen, Ph.D. Partner — Co-author of "Understanding Behavior in Huntington’s Disease: A Guide for Professionals" and co-author of "A Physician’s Guide to the Management of Huntington’s Disease"
- Karen Bryant, Ph.D, CCC/SLP Partner — Author of the guide on speech-language and swallowing difficulties in Huntington’s disease
- Martha A. Nance, MD Partner — Author of "The Juvenile HD Handbook" and editor of "Juvenile Onset HD" guide
- Massachusetts General Hospital Partner — Recipient of HDSA research grants for studies on plasma lipids as biomarkers and CAG somatic instability in Huntington's disease.
- PTC Therapeutics Partner — Reports on PTC Therapeutics' Phase 2 PIVOT-HD trial results for PTC518 as a potential HD treatment.
- Prilenia Partner — Collaborates on research initiatives related to pridopidine in Huntington's disease.
- Sage Therapeutics Partner — Communicates outcomes from Sage Therapeutics’ SURVEYOR trial evaluating SAGE-718 for cognitive symptoms in HD.
- Trinity College Dublin Partner — Recipient of HDSA research grant for a study on neural network alterations in premanifest Huntington's disease.
- U.S. Food and Drug Administration Government — Engages with FDA to advocate for regulatory flexibility in rare disease drug development pathways.
- UC Davis Partner — Hosts an HDSA Center of Excellence where Lisa Mooney, LCSW, provides services to the Northern California HD community.
- UC San Diego Partner — Host institution for a 2026 Donald A. King Summer Research Fellow.
- University of Pennsylvania Partner — Hosts the Penn Huntington’s Disease Center of Excellence, led by HDSA Board member Dr. Aaron Lasker.
- University of Washington Partner — Host institution for a 2026 Donald A. King Summer Research Fellow.
- Vicki Wheelock, MD Partner — Co-author of "A Physician’s Guide to the Management of Huntington’s Disease" and reviewer of Spanish-language caregiver guides
- Wave Life Sciences Partner — Tracks and disseminates results from Wave Life Sciences' SELECT-HD clinical trial for Huntington's disease.
+ 3 more
strategies · 5
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.
- Capacity Building Through Networked Education and Trainingmethodology: network-based_community_educationBy expanding a decentralized network of affiliates and training healthcare providers and early-career scientists, HDSA strengthens long-term care and research capacity, because investing in human infrastructure ensures sustainable, widespread expertise in Huntington’s disease management and innovation.
- Multidisciplinary, Family-Centered Care Modelmethodology: multidisciplinary_family-centered_careBy integrating clinical expertise, research, and social support within a family-focused framework, HDSA improves health outcomes and quality of life for individuals affected by Huntington’s disease, because holistic care that includes families enhances adherence, early intervention, and emotional resilience.
- Patient-Focused Research Acceleration with Real-World Evidencemethodology: patient-focused_research_accelerationBy advancing human-centered research and leveraging real-world data from ENROLL-HD to inform innovative trial designs, HDSA accelerates therapeutic development, because integrating patient data directly into research reduces time-to-insight and increases clinical relevance.
- Person-Centered, Neuroscience-Informed Caremethodology: person-centered_careBy grounding behavioral support in the neurological basis of Huntington’s disease and prioritizing individual autonomy, HDSA improves caregiver responses and patient functioning, because understanding symptoms as biologically driven reduces stigma and supports adaptive, dignified care.
- Storytelling and Community Engagement for Public Awarenessmethodology: storytelling-for-awarenessBy amplifying lived experiences through storytelling and community engagement, HDSA builds public compassion and support for people with Huntington’s disease, because personal narratives increase empathy, reduce isolation, and mobilize advocacy more effectively than data alone.