← Back to US Funders Directory

CHDI Foundation Inc

Annual Giving
$187.8M
Grant Range
$10K - $0.2M
Decision Time
4mo

CHDI Foundation Inc - Funder Overview

Quick Stats

  • Annual Giving: $187,765,039 (fiscal year ending October 2024)
  • Success Rate: Not publicly disclosed
  • Decision Time: 4 weeks initial review + 3-6 months for agreement execution
  • Grant Range: Project-dependent, research contracts typically substantial
  • Geographic Focus: International (700+ researchers worldwide)

Contact Details

Website: https://chdifoundation.org/
Email: info@chdifoundation.org
Location: Roseland, New Jersey
Offices: Los Angeles CA, New York NY, and Princeton NJ

Overview

CHDI Foundation, Inc. is a privately-funded, nonprofit biomedical research organization devoted exclusively to discovering and developing drugs that delay or slow Huntington's disease (HD). Officially incorporated in New Jersey on October 17, 2003, the foundation has become the largest single funder of Huntington's disease research worldwide. With an estimated annual budget exceeding $100 million, CHDI operates through a "virtual" biotechnology model, funding third-party research organizations rather than maintaining its own physical research infrastructure. The foundation's science directors and project managers work closely with a network of more than 700 researchers in academic and industrial laboratories around the world. CHDI is primarily supported by hedge fund entrepreneur Andrew Shechtel, who has donated at least $732 million directly since 2000, plus additional indirect support through allied organizations. The foundation maintains confidentiality regarding its donors' identities and operates with a highly focused mission to advance HD therapeutics.

Funding Priorities

Research Contracts (Not Traditional Grants)

CHDI does not operate as a traditional grant-making foundation. Rather than supplying grants, CHDI enters into research contracts with its collaborators and exerts a managerial role in addition to providing financial support. The foundation reviews proposals on a rolling basis and collaborates extensively with funded researchers.

Four Interconnected Thematic Areas:

  • Targeting Mutant Huntingtin: DNA, RNA, and protein approaches
  • Targeting Somatic Instability: Mismatch handling and repair mechanisms related to modifier genes
  • Targeting Non-Mismatch Repair Genetic Modifiers: Alternative genetic modification approaches
  • Gene Editing: Targeting the causative triplet repeat mutation in the huntingtin gene

Priority Areas

CHDI is receptive to novel ideas and will explore new areas of biology that have relevance to HD, particularly when:

  • Supported by robust human data evidence
  • The therapeutic approach has disease-modifying potential
  • Research aligns with one of their four thematic areas
  • Projects include clear milestones and deliverables

Research Coverage Includes:

  • Preclinical biology research
  • Clinical outcomes and neuroimaging research
  • Biomarker discovery (proteomics, fluid biomarkers, cfDNA methylation)
  • Natural history studies (SHIELD-HD, HDClarity cohort)
  • Advanced technologies (Deep Visual Proteomics, AI-driven analysis)

What They Fund

Personnel and Direct Costs:

  • Standardized full-time employee costs for postdocs and experienced research personnel
  • Consumables and animals
  • Limited travel expenses
  • Publication costs
  • Overhead costs (covered in budget)

What They Don't Fund

  • Graduate students
  • Training programs
  • Administrative staff
  • Equipment costs
  • Office supplies

Governance and Leadership

Executive Leadership:

  • Robi Blumenstein - President (hired to oversee what became a $100 million per year research effort)
  • Eileen Neacy - Chief Operating Officer
  • Ruth Basu - Chief Administrative Officer
  • Robert Pacifici, PhD - Chief Scientific Officer
  • Cristina Sampaio, MD, PhD - Chief Medical Officer
  • David Rankin - Chief Legal Officer

Vice Presidents:

  • Vahri Beaumont, PhD - VP, Preclinical Biology
  • David Howland, PhD - VP, Preclinical Biology
  • Thomas F. Vogt, PhD - VP, Preclinical Biology
  • Rebecca Fuller, PhD - VP, Clinical Outcomes
  • Emily Gantman, PhD - VP
  • Andy Stamford, PhD - VP, Chemistry
  • Swati Sathe, MD - Medical VP, Clinical Research
  • Andrew Wood, PhD - VP, Clinical Neuroimaging Research
  • Hilary Wilkinson, PhD - VP, Fluid Biomarkers

Senior Scientific Advisors Emeritus:

  • Ethan Signer, PhD
  • Allan Tobin, PhD

Organizational Structure: CHDI Management provides administrative, management, and contracting services to CHDI Foundation, with staff working across offices in New York, Los Angeles, and Princeton. The foundation employs over 250 individuals across scientific, clinical, administrative, and operational roles.

Application Process & Timeline

How to Apply

CHDI does not have regular grant cycles or issue formal requests for proposals. The foundation accepts proposals on a rolling basis throughout the year.

Step 1: Initial Submission

  • Submit a brief proposal/short summary via email to info@chdifoundation.org
  • No formal letter of intent required
  • Can be submitted at any time

Step 2: Initial Review

  • Proposals are assigned to the most relevant Thematic Area
  • Reviewed extensively by science directors
  • Initial review typically takes about 4 weeks

Step 3: Invitation for Full Proposal

  • If CHDI is interested, a science director will invite you to submit a full proposal and budget
  • Science director will work with you to develop research plan

Step 4: Research Agreement

  • Collaborate with CHDI science director on detailed work plan and budget
  • Define project description, milestones with deliverables, and specific budget
  • Agreement execution may take an additional 3-6 months

Important Note: CHDI scientists will be involved in the design and oversight of the project. This is a collaborative partnership model, not a traditional grant relationship.

Decision Timeline

  • Initial Review: 4 weeks
  • Full Proposal to Agreement: 3-6 months additional
  • Total Timeline: Approximately 4-7 months from initial submission to executed contract

Proposals reviewed on a rolling basis; no deadline pressure.

Success Rates

CHDI does not publicly disclose success rates or the number of proposals received versus funded. The foundation maintains that its priorities are highly specific and guidelines are rigorous.

Reapplication Policy

No specific reapplication policy is publicly stated. Given the rolling review process and collaborative nature, researchers are encouraged to contact CHDI directly to discuss revised or new proposals.

Application Success Factors

Novel Ideas with Strong Scientific Basis According to CHDI's official guidance, they are "receptive to novel ideas and will explore new areas of biology that have relevance to HD" - but specifically when supported by either:

  • Robust human data evidence, OR
  • Demonstrated disease-modifying potential

Alignment with Thematic Areas While CHDI welcomes novel approaches, proposals should clearly connect to one or more of their four thematic areas. Understanding their current research priorities increases likelihood of funding.

Collaboration Readiness CHDI's model involves active scientific involvement: "CHDI scientists will be involved in the design and oversight of the project and will work with you to develop a mutually agreeable research plan." Successful applicants must be comfortable with this collaborative, hands-on approach.

Clear Milestones and Deliverables Research agreements include "detailed project description, milestones with deliverables, and a specific budget." Proposals should demonstrate clear, measurable outcomes.

Recent Research Focus Areas (2024-2025) Understanding CHDI's current priorities helps align proposals:

  • HD biomarker discovery using proteomics and machine learning
  • cfDNA methylation as liquid biopsy markers
  • Multimodal neuroimaging approaches
  • RNAi-based modulation of MMR pathway
  • Targeting MutSβ function in triplet nucleotide repeat expansion
  • Deep Visual Proteomics combining AI-driven analysis with mass spectrometry

Intellectual Property Ownership A key advantage: The research institution retains ownership of generated data and intellectual property, holding exclusive publication rights. This makes CHDI partnerships attractive compared to industry contracts.

Budget Realism Proposals should request only what CHDI supports: postdoc/researcher salaries, consumables, animals, limited travel, and publication costs. Don't include graduate students, equipment, or administrative costs.

Key Takeaways for Grant Writers

  • Think partnership, not grant: CHDI operates as a collaborative science management organization, not a traditional funder. Expect active involvement from their science directors throughout your project.

  • Focus on disease-modification: Whether through human data or therapeutic potential, clearly articulate how your research could modify HD disease progression, not just understand it.

  • Rolling basis = no deadline pressure: Take time to develop a strong initial proposal. The 4-week initial review allows relatively quick feedback without deadline stress.

  • Budget appropriately: Only request postdocs, experienced personnel, consumables, and animals. Overhead is covered, but equipment and graduate students are not.

  • Align with current priorities: Review their annual conference presentations and recent news to understand where CHDI is currently investing. The four thematic areas are your compass.

  • Short initial proposal: Start with a brief summary, not a full proposal. This allows you to gauge interest before investing significant effort.

  • You retain IP rights: Unlike many industry partnerships, you'll own your data and IP, making this an attractive funding model for academic researchers who value publication freedom.

References

← Back to US Funders Directory