Huntington's Disease Foundation

What it reported doing in 2025

Huntington's disease foundation (hdf) advances paradigm-changing huntington's disease (hd) research through a collaborative approach to scientific discovery. We invest in research by providing senior scientists with grants, including our million-dollar transformative research awards, which began in 2023, and funding the work of early career scientists through postdoctoral fellowships. We champion collaborative science by organizing both small thinktank-style workshops and large scientific conferences which enable experts in hd to share their latest discoveries, explore cutting-edge technologies, and form collaborations. We highlight for the public notable work of scientists through our webinars.(continued on schedule o)in its early years, research organized and funded by the hdf was the catalyst for the work that isolated the gene that causes huntington's disease. This finding led to the development of a genetic test for hd and launched modern research efforts. The huntington's disease foundation supports research through several funding opportunities.hdf research grants: one-year grants provide senior researchers with seed funding to enable them to collect the preliminary data needed to obtain major, long-term funding from other organizations, including the nih.hdf postdoctoral fellowships: two-year fellowships fund the work of early-career scientists. These fellowships are intended to encourage and cultivate interest in huntington's disease research.transformative research awards: these million-dollar research awards, hdf's largest grants, fund collaborative research teams to create innovative ways to study new pathogenic disease mechanisms and treatment modalities in huntington's disease.hd career advancement grants: these are our newest awards with grants beginning in 2025. This incubator program supports young investigators by providing resources and tools to build the necessary skills to bridge the transition from postdoctoral position to tenure-track primary investigator. Our goal through this program and our postdoctoral fellowships is to engage and retain the brightest minds in hd research by funding and mentoring early-career scientists.hdf-funded researchers have made significant strides in applying advanced techniques such as artificial intelligence (ai), crispr and brain mapping, leading to tremendous promise for potential treatments for huntington's disease.

Financial Efficiency

• Mission deployment rate: 96.8%; rating input score 97
• Program expense ratio: 87.8%; rating input score 88
• Fundraising efficiency: $13.25 raised per $1 spent on fundraising; rating input score 45; 45th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
• Pay-setting controls: 2 of 6 controls in place; rating input score 33
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Pass
  • Compensation survey or study: Missing
  • Board or committee approval: Pass
• Foreign activity oversight: 3 of 8 controls in place; rating input score 38
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Pass
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 99.9%; rating input score 100; 48th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 88.2%; rating input score 88; 20th percentile among comparable filings
• Governance controls: 8 of 9 controls in place; rating input score 89
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Fail
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -6%; rating input score 14; 14th percentile among comparable filings
• Total-asset coverage ratio: 5.35; rating input score 82; 82nd percentile among comparable filings
• Liabilities to assets ratio: 0.1; rating input score 48; 48th percentile among comparable filings
• Officer compensation ratio: 12.2%; rating input score 28; 28th percentile among comparable filings

Growth

• Program expense growth: 10.2% per year; rating input score 100; 61st percentile among comparable filings
• Revenue growth: 8.2% per year; rating input score 100; 59th percentile among comparable filings
• Asset growth: 6.7% per year; rating input score 100; 42nd percentile among comparable filings