Dear Friends,

Thanks to the unwavering support of our dedicated friends and donors, 2023 was a year of significant progress for the Huntington’s Disease Society of America (HDSA). We expanded our reach and impact across all three pillars of our mission:

Expanding Access to Care: We’re thrilled to announce a major investment in patient care. The HDSA Centers of Excellence network grew to 56 comprehensive care clinics, with 11 partner locations nationwide. This $2 million+ initiative ensures that families affected by HD have greater access to expert care and dedicated HD-focused social workers.

Fueling Research Breakthroughs: HDSA committed over $3 million to vital research initiatives in 2023. These crucial funds support programs like the Berman-Topper Family HD Career Development Fellowship, HD Human Biology Projects, and Donald A. King Summer Research Fellowships, nurturing the pipeline of researchers dedicated to finding a cure for HD.

Building a Strong Community: We doubled our social worker network to 115 professionals this year, significantly expanding support for families affected by HD. In addition, we established a network of 168 support groups, in-person and virtual, increasing accessibility and ensuring that crucial resources are available to all. Finally, the 38th Annual HDSA Convention in New Orleans further strengthened our community, bringing over 800 attendees together to connect, learn, and forge lasting bonds.

Record-Breaking Engagement in Research
Collaboration is critical to accelerating progress in HD research. Partnering with CHDI, the HDSA Annual Convention hosted a groundbreaking on-site study with a record-breaking 214 participants. This initiative directly contributes to the development of more accurate and less burdensome testing methods for clinical trials.

Building on this momentum, HDSA launched the Huntington’s Disease Data Collection Initiative (HD-DCI) in June 2023. This groundbreaking program now rebranded as POWERHD, is our largest research project to date. POWERHD allows individuals living with HD to contribute invaluable data about the disease’s impact on their lives from the comfort of their homes. This patient-reported data is essential for researchers, providing crucial insights into disease progression and speeding up the development of new treatments.

Together, We Can Make a Difference
Fueled by your unwavering dedication, we are closer than ever to achieving our shared vision: a world free of Huntington’s disease. We will create a brighter future for those affected by this disease through your continued support, volunteer efforts and passionate advocacy. Get involved today! Visit hdsa.org to explore volunteer opportunities, donate, and learn more about upcoming events.

Thank you!