HD Human Biology Project & HD Human Experience Project
HDSA Human-Focused Research Funding
Research in humans is the path to better treatments for Huntington’s disease. HDSA’s grant programs place people with HD at the center of that research, supporting scientists and clinicians who study the biological mechanisms of HD in human systems, and who work to improve the lives of people living with the disease today.
Since 2013, the HD Human Biology Project has been the cornerstone of HDSA’s research strategy, funding studies that advance our understanding of HD biology through patient samples, clinical data, and collaborations with HD clinics. In 2026, HDSA is proud to introduce a companion program: the HD Human Experience Project, a new stream dedicated to understanding and improving the lived experience of HD.
Together, these programs reflect HDSA’s commitment to understanding HD from every angle: the biological mechanisms that drive the disease, and the daily realities faced by the people who live with it.
2026 Dates and Deadlines
(Applicable to both programs)
- Portal opens: April 17, 2026
- Letter of Intent due: May 22, 2026
- Full proposals due: July 24, 2026 (by invitation only)
- Scientific Advisory Board review: September 2026
- Notification of award: October 2026
- Start date: No later than December 1, 2026
Awards and Budget
(Applicable to both programs)
- Awards of up to $90,000 per year for one or two years
- Up to $72,000 for salary and fringe benefits
- Up to $30,000 for research costs and travel (max $5,000 for travel annually)
- No indirect or overhead costs permitted
- 50% minimum effort required from the applicant
- For-profit institutions must confirm that publication will not be restricted
How to Apply
(Applicable to both programs)
All applicants must submit a Letter of Intent (LOI) through ProposalCentral.
- Returning users can log in at proposalcentral.com, click Create New Proposal, search for “Huntington’s Disease Society of America,” and select the “Human Biology Project” or “Human Experience Project” program.
- New users must create an account before submitting.
The LOI (max 2 pages) should include:
- A summary that outlines the intended research, specifically states how the results will advance understanding of HD in humans, and explains its relevance to the program stream you have selected
- Specific Aims
- Brief Experimental Plan, including the time required to complete the studies
- Your qualifications as an applicant
Applicants whose LOIs are accepted will be notified by email and invited to submit a full proposal.
Invited applicants will be required to submit:
- Administrative details and institutional signature
- Applicant and mentor biosketches and other support (NIH-style acceptable)
- Scientific abstract and lay summary
- Full research proposal with milestones and statistical justification
- Letters of reference (1-3)
- IRB/IACUC or equivalent approvals (not required at submission but must be provided before award)
Questions can be directed to Tamara Maiuri, PhD, Associate Director, Research & Patient Engagement, at TMaiuri@hdsa.org, and Howlatu Sowe, Mission Program Coordinator, at HSowe@hdsa.org.
HD Human Biology Project
Overview
Despite the identification of the gene responsible for Huntington’s disease over 30 years ago, no treatments yet exist to slow or halt its progression. While animal models have been essential to building our understanding of HD, generating the biological insights needed to develop effective therapies requires research in humans. To meet this challenge, HDSA has adopted a patient-centered research strategy that places human biology at the core of HD research.
The HD Human Biology Project is the cornerstone of this strategy. Since launching in 2013, HDSA has committed more than $10 million to support this unique and impactful program.
This initiative supports research that advances our understanding of HD as it occurs in people, through the use of patient samples, clinical data, and collaborations with HD clinics.
Project Details
- 1-2 years of funding to support research directly focused on human HD biology
- Open to researchers worldwide regardless of title or institutional affiliation
- Early-career investigators are especially encouraged to apply
- Applications from nontraditional researchers (e.g., engineers, data scientists, rehabilitation specialists) and for-profit organizations are welcome
- Projects must involve human samples or data; iPSC-based studies must clearly link findings to clinical relevance
- A meaningful collaboration with an HDSA Center of Excellence or HD clinical site is required
HD Human Experience Project
NEW IN 2026
Overview
HDSA’s 2025 Voice of the Patient Report captured a clear message from over 1,000 people living with HD: the cognitive, psychiatric, and behavioral dimensions of the disease, including anxiety, depression, difficulty concentrating, emotional dysregulation, and obsessions and compulsions, are among the most disruptive forces in daily life, often well before motor symptoms take hold. Yet these experiences have been underserved by research, and evidence-based guidance on how to address them is limited.
The HD Human Experience Project is HDSA’s response to that gap. Launched in 2026 as a companion to the Human Biology Project, this new stream funds research that engages active human participants to study what it means to live with HD and how care, rehabilitation, and support can make a meaningful difference. It is grounded in HDSA’s strategic commitment to supporting people with HD as the field moves toward an era of disease-modifying therapies.
Project Details
- 1-2 years of funding to support research on the lived experience of HD
- Projects must involve active human research participants; the participant’s experience, response, or perspective must be central to the research question
- Open to researchers worldwide regardless of title or institutional affiliation, including those from rehabilitation, psychology, social work, nursing, occupational therapy, and related disciplines
- Early-career investigators are especially encouraged to apply
- A meaningful collaboration with an HDSA Center of Excellence or HD clinical site is required
- Applications from nontraditional researchers and for-profit organizations are welcome
Areas of interest include, but are not limited to:
- Cognitive, psychiatric, and behavioral features of HD and interventions to address them
- Rehabilitation approaches and their impact on function and quality of life
- Pre-symptomatic and early-stage HD: wellbeing, lifestyle guidance, and support before motor onset
- Caregiver burden and support interventions
- Patient-reported outcome measures relevant to clinical trials
- Digital health tools and telehealth where the research question concerns reach, adherence, or lived experience
- Comparative effectiveness of care practices across HD clinical sites
2025 RECIPIENTS
Shota Shibata, MD, PhD
Research Fellow, Massachusetts General Hospital
Mentor: Dr. Ricardo Mouro Pinto
Project Title: Clinically accessible biomarker for CAG somatic instability in Huntington’s disease Learn More
Kimberly Kegel-Gleason, PhD
Assistant Professor, Massachusetts General Hospital
Mentor:
Project Title: Plasma lipids as novel markers of Huntington’s disease progression Learn More
Eva Woods, BSc (Hons)
Researcher, Trinity College Dublin
Mentor: Dr. Roisin McMackin
Project Title: ElectroHD: A Multimodal Electrophysiological Approach to Decipher Neural Network Alterations in premanifest HD Learn More
