Chdi Foundation Inc.

CHDI Foundation operates on a model fundamentally unlike any traditional grantmaker. Rather than running competitive grant cycles, CHDI functions as a scientific management organization that deploys approximately $155-180 million per year in research contracts to hand-selected academic and industry partners worldwide. The foundation's anonymous donors (organized through Triplet Investment Company LLC, a named member of the foundation entity) provide annual contributions that are immediately deployed — the $91.6M in assets represents a lean operational cushion, not an endowment generating spending.

The foundation's mission is exclusively Huntington's disease (HD), making this one of the most tightly focused large biomedical funders anywhere. No adjacent neurodegeneration work, no general neuroscience, no rare disease portfolio — only research with a direct mechanistic and therapeutic pathway to HD. CHDI was established from the predecessor High Q Foundation (incorporated in New Jersey, October 2003) and formally assumed all HD research activities following a merger. Today CHDI manages a portfolio spanning exploratory biology, target identification and validation, drug discovery, and clinical trials, functioning as a virtual biotechnology company.

First-time researchers must understand that the typical engagement pathway is relationship-driven, not application-driven. CHDI staff scientists actively monitor the HD research landscape, attend scientific conferences, and identify promising investigators. Cold submissions are reviewed on a rolling basis but rarely advance without prior relationship or very strong alignment with current thematic priorities. The foundation's Academic Proposals page confirms: initial reviews take approximately 4 weeks; if interested, CHDI invites full proposal and budget development over a subsequent 3-6 months before contracts are executed.

CHDI's four current thematic areas are: targeting mutant huntingtin at the DNA, RNA, and protein levels; somatic instability and mismatch repair mechanisms; non-MMR genetic modifiers; and gene editing of the huntingtin triplet repeat. Proposals must fit squarely within at least one.

CHDI's collaboration model requires genuine scientific partnership — their scientists participate in study design and ongoing oversight as co-developers, not passive monitors. Researchers who value access to Enroll-HD clinical data (28,000+ participants), proprietary HD animal models, reagent libraries, and a 700-researcher global network will find CHDI an extraordinarily resource-rich partner. Those uncomfortable with external scientific oversight should look elsewhere.

CHDI's financial model draws a sharp distinction between programmatic research contracts (the vast majority of spending) and direct grants (a small, publicly visible fraction). From fiscal years 2018 through 2023, total giving ranged from $155.9M (FY2021) to $179.9M (FY2022-2023), averaging roughly $168M annually across that period. The longer historical record shows peak giving of $193.4M in 2014-2015, declining to $153.8M in 2012 and back up through the current range. Program expenses on the most recent 990 were reported at $127.1M, representing the operational cost of managing the research portfolio through CHDI Management Inc.

The direct grants tracked in the IRS database total $1.636M across 15 grants — a fraction of total activity. These represent administrative and community grants: $675,875 across 4 grants to the University of Kentucky Research Foundation (HTT lowering in non-human primate models); $475,000 across 2 grants to Johns Hopkins University (Precision Medicine Center for HD); $395,000 across 4 grants to the Huntington's Disease Society of America (fellowship programs); $80,601 across 4 grants to the Huntington Study Group (annual meetings); and $10,000 to the Huntington's Disease Youth Organization. Average across these 15 grants: $109,098. These figures do not reflect the scale of CHDI's core research contracts, which are negotiated confidentially and run substantially larger — multimillion-dollar multi-year contracts for programs involving non-human primates, clinical trial infrastructure, or CRO-based drug screening.

Geographically, the direct grant database shows New York (8 grants), Kentucky (4 grants), Maryland (2 grants), and Michigan (1 grant). CHDI's actual research contract portfolio is global, spanning 23 countries.

Revenue trends show annual donor contributions of $134M-$213M (average ~$163M over available years), with minimal investment return dependence ($4.6M net investment income on $91.6M assets in FY2023). Total assets have declined from $203.6M in 2015 to $79.6M in 2023 — a deliberate strategic choice to deploy capital aggressively into research rather than build an endowment. This pass-through structure means funding availability is entirely contingent on continued donor commitment.

CHDI Foundation has no true peer in HD research — it is the world's largest single funder of Huntington's disease research by a wide margin. The database-matched peer foundations share asset-size characteristics within the Health NTEE category but differ substantially in mission and operating model.

CHDI's defining financial characteristic is that its annual giving ($179.9M) dramatically exceeds its asset base ($91.6M) — possible only because CHDI operates as a conduit for annual donor contributions rather than as an endowment-spending foundation. The Leducq Foundation offers the closest structural parallel, as it also focuses on a single disease domain through invited international research networks rather than open competitions. For HD-specific research, the nearest peer alternatives are the Hereditary Disease Foundation and HDSA — both operating at significantly smaller scale (low millions annually) and focused on different pipeline stages such as graduate fellowships and patient-facing programs rather than drug discovery contracts.

CHDI has been notably active in expanding its network of strategic partnerships throughout 2025 and into 2026. On May 28, 2025, Charles River Laboratories announced the extension of its multi-decade collaboration with CHDI, marking over 20 years of joint drug discovery work that has produced engineered HD animal models, HTS campaigns, proof-of-concept molecules, and preclinical candidate evaluations.

CHDI held its 20th Annual Huntington's Disease Therapeutics Conference in February 2025 in Palm Springs, California — one of the field's premier scientific gatherings. The conference featured presentations on DNA mismatch repair mechanisms, genome editing strategies, and updates from active HD clinical trials. A "Postcard from Palm Springs" video summary for non-scientific audiences was released May 15, 2025.

In February 2026, Unlearn announced a partnership to train its Huntington's disease Digital Twin Generator on longitudinal Enroll-HD participant data. This reflects CHDI's growing investment in AI-assisted clinical trial design — digital twins can reduce required placebo group sizes and accelerate HD trial timelines, a strategic priority given the number of therapies in mid-stage development.

The 21st Annual HD Therapeutics Conference was announced for 2026, with the 41st Annual HDSA Convention (June 25-27, 2026, Phoenix, AZ) and the EHDN Clinical Research Congress (October 22-24, 2026, Kraków, Poland) providing additional community touchpoints. Leadership has been stable: Robi Blumenstein remains President of CHDI Management Inc. ($635,000 compensation), and Kenneth J. Slutsky continues as President/Treasurer of the foundation entity.

Approaching CHDI requires abandoning the conventional grant-writing playbook. This foundation does not issue RFPs, does not run grant cycles, and — as of 2025-2026 — explicitly states it is not accepting letters of intent for either preclinical or clinical research. The path to funding is through scientific credibility and relationship, not proposal narrative.

Establish domain relevance before any outreach. Your research must fall squarely within CHDI's four thematic areas: mutant huntingtin targeting (DNA/RNA/protein lowering), somatic instability and mismatch repair pathways, non-MMR genetic modifiers, or gene editing of the huntingtin CAG repeat. Work that is compelling neuroscience but tangential to HD mechanism and therapeutic development will not advance. Proposals supported by robust human genetic or patient evidence significantly outperform purely preclinical submissions.

Identify your specific CHDI Science Director contact. Do not send cold emails to the general jobs address (jobs@chdifoundation.org). Identify the science director whose portfolio most closely matches your focus area via the Academic Proposals page (chdifoundation.org/funding-partnerships/academic-proposals/). A brief, targeted description of your work — 200 words or fewer — is the appropriate opening move.

Submit a short proposal summary. If CHDI is interested, they will invite a full proposal and budget. Initial review takes approximately 4 weeks. Full proposal development takes an additional 3-6 months before contract execution.

Structure your budget to CHDI's policy. Supported costs include: postdoctoral researcher and experienced research personnel FTE costs, consumables, animals, limited travel, publication costs, and standard institutional overhead. Categorically excluded: graduate student stipends, training programs, administrative staff, equipment purchases, and office supplies. Including excluded items signals unfamiliarity with CHDI and weakens the submission.

Accept the co-investigator relationship. CHDI scientists participate in project design, interpret interim results, and influence research direction. Investigators who have thrived in CHDI partnerships describe it as having a highly resourced scientific collaborator with deep HD domain knowledge. Those who find external scientific oversight uncomfortable are not suited to this model.

Build visibility through HD community engagement. Presenting at the annual HD Therapeutics Conference, publishing in HD-relevant venues, and engaging with Enroll-HD data initiatives raise your profile with CHDI staff well before any formal proposal.