named programs · 4 · from sources
What they call their work
Dysautonomia Center at NYU
Comprehensive treatment center providing specialized medical care for FD patients; includes research laboratory and accredited fellowship program
FD Center at Sheba Medical Center
Second dedicated FD treatment center in Israel offering comprehensive care under the direction of Dr. Ori Efrati
FD Day Annual Conference
Annual symposium bringing together families and caregivers for education and connection
Research Funding Program
Supports research initiatives at institutions worldwide, including work on small molecules, gene therapy, and antisense oligonucleotides targeting the ELP1 gene
activities · 5 groups
What they do
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Rare Genetic Disease Research and Advocacy 3 activities
- Advocating for expanded carrier screening and clinical awareness of FDConducts advocacy efforts to promote mandatory FD carrier screening for at-risk populations and improve clinical understanding through engagement with professional medical organizations.
- Establishing public benefit entities to accelerate drug developmentFounded Tikun Therapeutics, a wholly owned public benefit corporation, to advance and accelerate the development of therapeutics for Familial Dysautonomia.
- Funding and conducting scientific research toward a cure for Familial DysautonomiaSupports and conducts biomedical research including gene discovery, gene therapy development, antisense oligonucleotide trials, and small-molecule optimization to improve life expectancy and quality of life for individuals with FD.
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Genetic and Neurological Disease Research Funding 3 activities
- Endowing academic positions and research initiatives in FDEndowed the world's only professorships dedicated to Familial Dysautonomia research and treatment at NYU School of Medicine to advance scientific expertise and therapeutic development.
- Funding Familial Dysautonomia treatment centersFunds the operation of the world's only two dedicated Familial Dysautonomia treatment centers, located in New York and Israel, providing comprehensive clinical care and advancing research.
- Supporting research at academic and medical institutions globallyAwards grants to support FD-related research at institutions including UTHSC Memphis, Tel Aviv University, Aix-Marseille Université, Michigan State University, Cold Spring Harbor Laboratory, Massachusetts General Hospital, and Tufts University.
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Patient and Researcher Conferences 1 activity
- Organizing educational and community symposia for FD families and professionalsHosts annual FD Day symposia for affected families and caregivers, and sponsors medical conferences for doctors and scientists to share advances in FD care and research.
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Familial Support for Rare Genetic Conditions 1 activity
- Providing specialized medical care and support services for individuals with Familial DysautonomiaOperates and funds access to specialized medical care, equipment, and support services for individuals affected by Familial Dysautonomia, including through dedicated treatment centers and free quality-of-life programs.
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Uncategorized 1 activity
- Expanding clinical and research infrastructure for FD careCompleted expansion of the Dysautonomia Center at NYU, doubling clinical and research space and adding a state-of-the-art research laboratory to enhance treatment and research capacity.
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financials · form 990 · fy2024
revenue
Total revenue$1.56M
Contributions & grants$730K47%
Program service revenue$00%
Investment income$54K3%
Other revenue$774K
expenses
Total expenses$2.03M
Program expenses82%
Admin / overhead15%
Fundraising4%
Salaries & benefits$484K
Grants paid out$1.25M
Largest expense lineCompensation
balance sheet
Total assets$1.10M
Cash$140K
Investments$0
Liabilities$264K
Net assets$834K
Liquid reserves0.8 mo
5 years on record · 2020–2024 · YoY revenue +28.2%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| LANIE ETKIND | Executive Dir. | 40 | $302K |
board members · 15
- ALLAN COHEN — Treasurer
- BRIAN STILLMAN — Director
- DANIEL LANDAU — Director
- EDWARD BARANOFF — Vice President
- FAYE GINSBURG — President
- GERALD ADLER — Director
- GREGG MEYERS — Director
- JEFFREY GOLDBERGER — Vice President
- JENNIFER SONENSHEIN — Director
- LAURENT LANDAU — Vice President
- LISA NEWMAN — Vice President
- PAUL B WEXLER — Vice President
- REBECCA SERNOVITZ — Director
- STEVEN KIETZ — Vice President
- STEVEN S FASS — Secretary
relationships · 22
Who they work with
- Aix-Marseille Université Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- American College of Obstetricians and Gynecologists Partner — Collaborated to advocate for mandatory FD screening for at-risk families.
- Charity Navigator Network — Recognized and reviewed on Charity Navigator for operational excellence.
- Cold Spring Harbor Laboratory Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- Dysautonomia Center Partner — Collaborates with the Dysautonomia Center as a recommended medical resource for patients.
- Dysautonomia Center Partner — Collaborates with the Dysautonomia Center to provide clinical care and medical guidance for individuals with FD.
- Dysautonomia Center Partner — Recommends the Dysautonomia Center as a source for medical care and guidance.
- Guide Star Network — Profiled on Guide Star for organizational transparency.
- Hadassah Hospital-Mt. Scopus Partner — Hosts the Dysautonomia Center in Israel established in 1980.
- Massachusetts General Hospital Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- Michigan State University Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- NYU Dysautonomia Center Partner — Collaborates with the NYU Dysautonomia Center, which is dedicated to FD patients and has operated for over half a century.
- NYU Langone Health Partner — Collaborates with the Dysautonomia Center at NYU Langone Health, a primary FD treatment center funded by the Foundation.
- NYU Medical Center Partner — Hosts the Dysautonomia Treatment Center and later the expanded Dysautonomia Center with research lab.
- NYU School of Medicine Partner — Hosts the endowed professorships in FD research and treatment funded by the foundation.
- National Institutes of Health (NIH) Partner — Collaborates with the NYU Center on FD research involving patients and mouse models.
- Sheba Medical Center Partner — Hosts the second FD Center in Israel funded by the Foundation since 2012.
- Tel Aviv University Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- Tikun Therapeutics Partner — Wholly owned subsidiary public benefit corporation established to accelerate drug development for familial dysautonomia.
- Tufts University Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- University of Tennessee Health Science Center (UTHSC) Memphis Partner — Recipient of research funding from the Familial Dysautonomia Foundation.
- n-Lorem Foundation Partner — Collaborates on the development and clinical testing of an antisense oligonucleotide therapy for FD.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Community-Driven, No-Overhead Funding Modelmethodology: no-overhead-funding-modelBy channeling 100% of grant funds directly into care and research and leveraging a community-driven movement initiated by affected families, the foundation maximizes impact because donor dollars are fully dedicated to mission-critical work and stakeholder-aligned priorities.
- Integrated Care and Research Modelmethodology: integrated-care-modelBy combining medical care, research, social services, and public education into a single coordinated system, the foundation improves outcomes for individuals with familial dysautonomia because holistic, multidisciplinary support addresses both clinical and psychosocial needs simultaneously.
- Research-Driven Therapeutic Developmentmethodology: evidence-based_research_and_treatment_developmentBy funding and advancing targeted scientific research—including gene therapy, antisense oligonucleotides, and small molecule splicing correction—the foundation develops treatments that address the root genetic cause of FD, because correcting ELP1 gene dysfunction can slow or reverse disease progression.