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Daftuar Family Foundation (Lipedema Foundation)

Annual Giving
$3.8M
Grant Range
$80K - $0.3M
Decision Time
8mo

Daftuar Family Foundation (Lipedema Foundation)

Quick Stats

  • Annual Giving: $3.75 million (2023)
  • Total Awarded: $12.9 million+ across 62+ research awards since 2015
  • Grant Range: $80,000 - $250,000
  • Decision Time: Approximately 8 months from LOI to project start
  • Geographic Focus: Global (international applications welcome)

Contact Details

Website: https://www.lipedema.org
Email: awards@lipedema.org
Location: New York, NY
EIN: 47-4685449

For grant inquiries, applicants should contact awards@lipedema.org. Applicants seeking assistance with patient recruitment or biospecimen provision should reach out at least 3 weeks prior to submission deadlines.

Overview

The Daftuar Family Foundation, operating as the Lipedema Foundation, was established in August 2015 by Felicitie Daftuar to address a critical gap in medical research funding for lipedema, a chronic condition affecting predominantly women. With total assets of approximately $77.9 million and annual giving of $3.75 million (2023), the foundation has awarded over $12.9 million to more than 62 clinical, translational, and basic science projects globally. The foundation's mission is to "Define, Diagnose and Develop Treatments for Lipedema" through strategic, high-risk, high-reward research investments. Working in partnership with the Milken Institute's Center for Strategic Philanthropy, the foundation prioritizes transparency, collaboration, and community-focused research. In 2024, the foundation held its largest biennial Scientific Retreat in Herndon, Virginia, with 80 attendees from 13 countries, demonstrating its growing international impact.

Funding Priorities

Grant Programs

The foundation offers three primary research award categories through an annual Request for Proposals:

  • Collaborative Research Award: Up to $250,000 over two years for multi-institutional or multi-disciplinary research teams. Applications involving current LF grantees receive priority review. (Rolling online portal with annual deadline cycle)

  • Proof of Concept Award: Up to $125,000 for one year to support development of preliminary data for highly innovative hypotheses. Eligible for streamlined renewal. (Rolling online portal with annual deadline cycle)

  • Mentored Award: Up to $100,000 over two years for postdoctoral researchers, including clinical fellows, who received their doctoral degree or completed residency within 5 years of application. Potential for third-year renewal. (Rolling online portal with annual deadline cycle)

Priority Areas

The foundation places particular strategic emphasis on:

  • Diagnostic tools and biomarker development - highest priority
  • Imaging strategies for improved diagnosis
  • Infrastructure for future clinical trials
  • Model systems for studying lipedema
  • Hormone and endocrine biology research
  • High-throughput screening approaches
  • Research addressing the Lipedema Research Roadmap recommendations
  • Basic biology, genetics, and epidemiology of lipedema
  • Projects that involve blood/biosample collection for the foundation's biobank

What They Don't Fund

While not explicitly stated, the foundation's focus is specifically on scientific research related to lipedema diagnosis, pathophysiology, and treatment. General medical care, patient support services, and projects outside the lipedema research scope are not funded through their research grants program.

Governance and Leadership

Trustees:

  • Felicitie Daftuar - Founder & Executive Director (serves without compensation)
  • Suhas Daftuar - Trustee (serves without compensation)

Executive Leadership:

  • Jonathan Kartt - Chief Executive Officer
  • Ashok Srinivasan, PhD - Chief Science Officer

Founder's Vision:

Felicitie Daftuar has been a vocal advocate for strategic, evidence-based philanthropy. Key quotes include:

  • "To make an impact, you need to do your homework" - emphasizing the importance of strategic giving aligned with desired patient outcomes
  • "If it affected men the way it affects women, there would be more research already" - highlighting the gender disparity in lipedema research
  • On their funding strategy: "We wanted to make sure our investments were not only high-risk, but also had the opportunity for high reward"

Daftuar founded the organization after recognizing the critical lack of dedicated research funding, noting at medical conferences, "There were not enough physicians interested," which motivated her to create the foundation.

Application Process & Timeline

How to Apply

The foundation uses a two-stage electronic application process through their online portal:

Stage 1: Letter of Intent (LOI)

  • Reviewed by foundation staff and volunteers for alignment with priorities
  • Selected applicants invited to a 90-minute video call for feedback
  • No preliminary data required due to limited existing research in the field

Stage 2: Full Application

  • By invitation only following LOI stage
  • Must be submitted through official electronic portal (no email submissions)
  • Reviewed by subject matter experts using peer review process

Key Requirements:

  • Clear diagnostic and inclusion/exclusion criteria for patient recruitment
  • Appropriate control groups matching demographics
  • Sample size and analytical plan
  • For potential biomarkers: context of use documentation
  • Budget justification (10% maximum indirect costs allowed)

Allowable Budget Items:

  • Personnel costs
  • Supplies
  • Patient recruitment expenses
  • Travel
  • Publication costs
  • Non-durable equipment

Use of AI Tools: The foundation permits use of AI tools in applications with proper disclosure.

Decision Timeline

Based on the 2025 RFP cycle:

  • April 14: Application portal opens (12:00 PM EST)
  • June 10: LOI submission deadline (11:59 PM EST)
  • August 18: Notification of invitation/declination to video call
  • Late Summer/Fall: Full application submission (invited applicants)
  • February 2026: Earliest project start date

Total timeline: Approximately 8 months from LOI submission to project start.

Notification is provided via email. Unsubmitted proposals remain in draft status until the review cycle completes plus one month. Unfunded proposals remain accessible in the applicant's portal for 1 year.

Success Rates

The foundation made:

  • 18 awards in 2023
  • 12 awards in 2021
  • 8 awards in 2022

While specific application-to-award ratios are not publicly disclosed, the foundation describes the process as "competitive." Applications involving current LF grantees receive priority review, suggesting that building a relationship with the foundation through initial funding increases likelihood of future success.

Reapplication Policy

Specific reapplication policies for unsuccessful applicants are not explicitly documented in public materials. However, the foundation's approach of keeping unfunded proposals in applicants' portals for one year suggests they support iterative improvement. Applicants are encouraged to contact awards@lipedema.org for guidance on reapplication.

Application Success Factors

What the Foundation Prioritizes

1. Strategic Alignment with Diagnostic Priorities The foundation places "high priority on understanding the diagnostic criteria and inclusion/exclusion criteria used in any proposals requiring recruitment of new patients." Applications focused on diagnostic tools and biomarker development receive highest consideration.

2. Feasible Participant/Sample Access "A clear and feasible approach for recruiting participants and/or accessing samples and data is essential for successfully securing an LF research award." Ideally, projects should have access to local participants through institutional affiliations or collaborations.

3. Scientific Rigor Despite Limited Preliminary Data While the foundation recognizes that "given the relatively scant knowledge of Lipedema, the Foundation does not require preliminary data," they note that "projects that can document technical expertise or initial findings may be at a competitive advantage."

4. Collaborative Approach Applications involving current LF grantees receive priority review. The foundation values building an interconnected research community.

5. Representative Study Design "All studies should include appropriate controls for the hypothesis being tested, and applicants should make an effort to assure that the control groups will reasonably match the demographics."

Strategic Timing

Applicants seeking patient recruitment assistance or biospecimen provision must discuss needs with foundation staff at least 3 weeks prior to submission deadlines. This early engagement signals the foundation's preference for collaborative planning.

Recent Funded Projects

Notable 2023 award: Vanderbilt University Medical Center received over $700,000 over two years to establish one of the first-ever biorepositories focused on lipedema research, led by Rachelle Crescenzi, PhD, and Aaron Aday, MD, MSc.

Key Takeaways for Grant Writers

  • Diagnostic focus wins: The foundation's highest strategic priority is advancing diagnostic tools and biomarker development - align your research explicitly with this goal
  • Don't skip the early conversation: Contact foundation staff at least 3 weeks before deadlines if you need patient recruitment or biospecimen support - this collaboration is valued
  • No preliminary data required, but technical expertise helps: While you don't need preliminary findings given the limited lipedema research, demonstrating your team's technical capabilities provides competitive advantage
  • Collaboration matters: Applications involving current grantees get priority review - consider partnering with existing award recipients
  • Demographics and controls are scrutinized: The foundation carefully evaluates your diagnostic criteria, recruitment strategy, and control group representativeness - be specific and thorough
  • High-risk, high-reward is the strategy: As founder Felicitie Daftuar states, they seek investments with "opportunity for high reward" - bold, innovative hypotheses aligned with patient outcomes are welcomed
  • Global reach with strategic focus: International applicants welcome, but research must align with the Lipedema Research Roadmap and foundation priorities

References

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