named programs · 3 · from sources
What they call their work
Genetic Risk and Prevention Guidance
Offers guidance on genetic testing, penetrance, and modifiable risk factors such as toxins, lifestyle, and hormonal influences to help at-risk individuals prevent or delay disease onset.
LHON Information and Education
Provides comprehensive, up-to-date information on Leber Hereditary Optic Neuropathy, including symptoms, genetics, diagnosis, risk factors, and treatment research for patients, families, and healthcare providers.
Scientific Research Dissemination
Curates and shares peer-reviewed research findings, clinical insights, and emerging therapeutic approaches related to mitochondrial optic neuropathies, with a focus on LHON and related disorders.
activities · 3 groups
What they do
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Vision Research Funding 2 activities
- Conducting and supporting research on optic nerve disease and mitochondrial dysfunctionSupports and conducts scientific research into optic nerve diseases, including studies on mitochondrial DNA editing, neurochemical mechanisms of glaucoma, mitochondrial regulation, astrocyte immunometabolic dysfunction in LHON, and toxicological impacts of compounds like benzalkonium chloride and cetylpyridinium chloride.
- Funding research on causes, prevention, and treatment of optic nerve diseaseProvides financial support for research projects focused on the causes, prevention, and treatment of optic nerve diseases, including glaucoma and Leber Hereditary Optic Neuropathy (LHON), with an emphasis on directing donations to researchers' direct, non-administrative expenses.
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Rare Genetic Disease Research and Advocacy 1 activity
- Facilitating patient participation in disease registriesSupports and collaborates with organizations such as LHON.org, LHON Canada, and The LHON Society to maintain a Leber Hereditary Optic Neuropathy (LHON) registry database and enables patient contributions to research through data sharing.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing patient and professional education on optic nerve diseasesOffers informational resources, maintains a glossary of terms, hosts educational talks (including Dr. Alfredo Sadun’s LHON 101 presentation), and provides referrals to specialists for individuals with optic nerve disease, particularly those with unexplained sudden vision loss.
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financials · form 990EZ · fy2025
revenue
Total revenue$20K
Contributions & grants$17K86%
Program service revenue——
Investment income$3K14%
Other revenue—
expenses
Total expenses$50K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$36K
balance sheet
Total assets$45K
Cash—
Investments—
Liabilities—
Net assets$45K
6 years on record · 2020–2025 · YoY revenue +14.5%
relationships · 32
Who they work with
- American Academy of Optometry Partner — Presented research findings from an IFOND-sponsored investigation at its scientific meeting.
- Br J Ophthalmol Network — Published research on smoking as a factor in Leber's hereditary optic neuropathy cited by IFOND
- Cardiff University Partner — Hosts the Principal Investigator and Post-doctoral Research Associate for the LHON research project.
- Donald Diehl Partner — Conducted annual fundraising campaigns for IFOND, including on Facebook, and raised over $7,000 in 2025 and over $6,500 in 2024.
- Einhorn Family Charitable Trust Funder — Donated multiple times to IFOND, including $2,000 in December 2024 and $1,000 in January 2023 and January 2022.
- IRS Government — Registered as a 501(c)(3) tax-exempt organization with the IRS
- Investigative Ophthalmology & Visual Science Network — Published research on benzalkonium chloride and mitochondrial dysfunction cited by IFOND
- Knights of Pythias, Long Island Chapter Partner — Provided a $1,000 donation to IFOND.
- LHON Canada Partner — Cooperates with IFOND to maintain the Leber Hereditary Optic Neuropathy registry database.
- LHON.org Partner — Cooperates with IFOND to fund research and provide support for LHON.
- LHON.org Partner — Cooperates with IFOND to maintain the Leber Hereditary Optic Neuropathy registry database.
- Larue R. Gibson Jr. Family Charitable Fund Funder — Repeatedly donated to IFOND, including $1,200 in January 2026 and $1,000 in December 2023 and January 2023.
- Lions Club of Cornwall, New York Partner — Donated $1,000 in 2026 and $1,000 in 2017 to support IFOND’s work in optic nerve disease research.
- Lions Clubs International Partner — Recognized for traditional support of sight programs worldwide, including through donations from affiliated clubs such as the Lions Club of Cornwall, New York.
- McCormick & Company, Inc Partner — Provided multiple donations to IFOND through its Matching Gift Program and Community Service Award, including funds raised by employee Donald Diehl.
- Medical Research Council Government — Sponsored an open access review on advances in regulation of mammalian mitochondrial gene expression cited by IFOND.
- Mitochondrial Biology Unit Partner — Research unit of the Medical Research Council whose work on mitochondrial gene expression is referenced by IFOND.
- Mitochondrion Network — Published research on toxic medications in Leber's hereditary optic neuropathy cited by IFOND
- National Organization for Rare Disorders Partner — Referenced as a related organization with a LHON page that links to other foundations, including IFOND.
- Nature Network — Source where referenced research on mitochondrial DNA editing was published and disseminated.
- OMIM Network — References OMIM as a source for genetic information on LHON.
- RareX Partner — Powers the Leber Hereditary Optic Neuropathy registry database in cooperation with IFOND.
- Steve and Sherry Einhorn Funder — Donated $2,000 in 2026 and previously contributed to IFOND’s research funding efforts.
- The LHON Collective Partner — Provided $5,000 to support IFOND’s funding of research at the Sadun Lab at Doheny on Leber's Hereditary Optic Neuropathy (LHON).
- The LHON Society Partner — Cooperates with IFOND to maintain the Leber Hereditary Optic Neuropathy registry database.
- The Welcoming Club of Garden City Partner — Provided a $15,000 donation to IFOND in July 2010.
- US Department of Health and Human Services Government — Source of referenced data on the presence of benzalkonium chloride, cetylpyridinium chloride, and triclosan in household products.
- United Mitochondrial Disease Foundation Partner — Referenced as a related foundation supporting research on inherited mitochondrial diseases, including LHON.
- University Hospital Wales Partner — Employer of the Principal Investigator, who serves as Consultant Ophthalmologist.
- Wikipedia Network — Referenced as a source for information on toxic and nutritional optic neuropathy
+ 2 more
strategies · 4
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.
- Genetic-Based Early Intervention Modelmethodology: preventive_genetic_screeningBy identifying at-risk individuals through genetic testing and family screening, the organization enables preventive lifestyle and dietary changes because early knowledge of genetic status allows for timely mitigation of environmental triggers before irreversible vision loss occurs.
- Neurodegenerative Framework for Glaucoma and LHONmethodology: neurodegenerative_model_of_glaucomaBy studying glaucoma and LHON as neurodegenerative disorders involving neuronal cell death and glia-neuron dysfunction, the organization advances therapies because redefining these conditions beyond traditional ophthalmic models enables novel neuroprotective and regenerative approaches.
- Prevention Through Mitochondrial Risk Mitigationmethodology: prevention_through_toxin_avoidanceBy promoting avoidance of mitochondrial toxins and supporting antioxidant use, the organization reduces the risk of vision loss in genetically susceptible individuals because environmental triggers interact with inherited mutations to initiate disease expression in conditions like LHON.
- Research-Driven Understanding and Treatment of Optic Nerve Diseasemethodology: research_and_disseminationBy funding and supporting targeted research into the genetic, mitochondrial, and neurodegenerative mechanisms of optic nerve diseases, the organization advances understanding and develops treatments because scientific discovery is foundational to medical progress in rare and hereditary conditions.