IFOND's mission is to support research into the causes, prevention and treatment of optic nerve disease, and to inform health care workers, patients and families affected. IFOND was started by Anne and Fred Diehl when they learned, after visits to many different eye specialists, that the sudden vision loss their 25 year old son experienced was caused by Leber's Hereditary Optic Neuropathy (LHON). The diagnosis was easy once they found doctors familiar with Leber's and with the LHON diagnostic blood test, developed in 1992.

As the Diehls began to inform themselves about LHON, they encountered the excitement among researchers worldwide over progress in understanding the underlying causes of Leber's and other diseases of the optic nerve and nervous system. The Diehls realized the work of a foundation dedicated to optic nerve disease could help move this work forward and help other families afflicted. IFOND was incorporated as a non profit foundation in October, 1995.

IFOND welcomes your support. If you would like to donate time or money to help IFOND please contact us.

Efficient funding

IFOND is an extremely lean, all volunteer 501(c)(3) tax status registered nonprofit. We have no salaried associates. Our process minimizes costs and maximizes funding for researchers' direct, non administrative expenses. All donations are tax deductible in the United States of America. Our recent tax returns are searchable here e.g. latest IRS website listed year 2023 here. Tax Year 2022 Form 990EZ and Tax Year 2022 IRS Filing Acceptance. Also see here. Our strong scientific board includes many of the prominent world leading published researchers in optic neuropathies who plan, guide and do research in optic nerve disease. If this big bang for your buck, open disclosure model appeals to you, please donate. If you are a researcher in optic neuropathy, we welcome your funding application.

IFOND Board of Directors

Alfredo Sadun, MD, PhD (Chair)
Professor of Neurosurgery and Ophthalmology
Doheny Eye Institute, University of California Los Angeles
Los Angeles, California, United States of America
Wikipedia page, UCLA Health page, Sadun Doheny Research Team, Google scholar, ResearchGate summary, Abstracts

Ivan Bodis-Wollner, MD, D.Sc. (Chair Emeritus, deceased 28 June 2024)
Professor, Neurology and Ophthalmology
Downstate Medical School State University of New York, United States of America
Professor Ivan Bodis-Wollner was a brilliant and good man who devoted his life to do good and to do science well.
Among his many outstanding achievements he was a foundational member and driver of IFOND.
He will be sadly missed and fondly remembered by all his colleagues and friends. As one one of them said, "he was a force of nature."
IFOND offers its gratitude, condolences and sympathy to his family.
Google Scholar, research.com

Anne and Fred Diehl
Founders of IFOND

Bryan Cebuliak, MD (Web site editor)
General Practitioner
Brisbane, Queensland, Australia

Elaine Cebuliak, BVSc
Veterinary Surgeon and Physician
Brisbane, Queensland, Australia

Olie Westheimer, MA (retired)
Charity promoter. Founding board member

Michael J. Moriarty, MBA, CPA
Managing Partner Capital Hospitality Group
Herndon, Virginia, United States of America

John Nolan, CPA
Investment Banker
New York, United States of America

Lissa Poincenot, MBA
Founder of LHON.org and published scientific author
Carlsbad, California, United States of America

IFOND Scientific Advisory Board Directors

Jerome Sherman, OD
Distinguished Professor of Optometry
State College of Optometry,
State University of New York
New York, New York, United States of America
Retinarevealed.com, ResearchGate summary

Margaret Wong-Riley, PhD
Professor Emeritus, Cell Biology, Neurobiology and Anatomy
Medical College of Wisconsin,
Milwaukee, Wisconsin, United States of America
research.com summary, ResearchGate summary
See her book documenting 40 years of her important research here:
Wong-Riley, Margaret T.T. (2026) Cytochrome c Oxidase A Treasure Trove in Revealing Neuronal Properties from Systems to Molecules. Boca Raton, Florida: CRC Press. DOI https://doi.org/10.1201/9781003507765, 310 pages, eBook, ISBN 9781003507765. Google books, Amazon.

Valerio Carelli, MD, PhD
Professor in Neurology and Medical Genetics,
Department of Biomedical and Neuromotor Sciences, University of Bologna (UNIBO)
IRCCS Institute of Neurological Sciences of Bologna (ISNB), Bellaria Hospital
Director of the Program in Neurogenetics
Director of the Alma Healthy Planet Center of UNIBO
Bologna, Italy
ResearchGate summary, Google Scholar

Patrick Yu-Wai-Man, BMedSci, MBBS, PhD, FRCPath, FRCOphth Professor of Ophthalmology
Moorfields Eye Hospital and UCL Institute of Ophthalmology, London, United Kingdom
Cambridge Eye Unit, Addenbrooke's Hospital, Cambridge, United Kingdom
Department of Clinical Neurosciences, University of Cambridge, United Kingdom
ResearchGate summary, Google Scholar

Rustum Karanjia, PhD, MD (mentor, IFOND Emerging Scientists Committee)
Assistant Professor, Ophthalmology, Ottawa Eye Institute and VP Research, Department of Ophthalmology
University of Ottawa, Ottawa, Ontario, Canada
Visiting Researcher, Neuro-Ophthalmology
Doheny Eye Institute, UCLA, Los Angeles, California, United States of America
Editor in chief of the journal Eye and Brain, published by Dove Medical Press/Taylor & Francis. (succeeding our long time board member Professor Margaret Wong-Riley)

Chiara La Morgia, MD, PhD
Associate Professor in Neurology at the IRCCS Institute of Neurological Sciences of Bologna,
Neurology Clinic, Bellaria Hospital, Via Altura 3, 40139, Bologna, Italy;
Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Italy
ResearchGate summary, Google Scholar

Dr Piero Barboni
Neuro ophthalmogy specialist clinician and researcher
Studio Oculistico d’Azeglio, Piazza Galilei, 6 40123, Bologna, Italy
Curriculum Vitae.

Marcela Votruba MA (Oxon) BM BCh FRCOphth PhD FLSW
Professor of Ophthalmology School of Optometry & Vision Sciences, Cardiff University
Consultant Ophthalmologist, Ophthalmic Genetics Lead, University Hospital Wales
Health Care Research Wales Specialty Lead Ophthalmology
Visiting Researcher, Karolinska Institutet, Stockholm
Visiting Professor Charles University, Prague
European Association for Vision and Eye Research [EVER] Fellow & Senior Adviser
ReseachGate summary , Google Scholar citations

IFOND Emerging Scientists Committee

Maryam Golmohammadi, MD (Chair)
Doheny Eye Institute, University of California, Los Angeles
Curriculum Vitae.

Michael James Gilhooley, MA, MBBCh, PhD (Co-Chair)
UCLA Stein Eye Institute 100 Stein Plaza, Floor 1, Los Angeles, CA 90095
Google scholar citations
Doheny page

Guilia Amore, MD, PhD
Department of Biomedical and Neuromotor Sciences, University of Bologna, Bologna, Italy.
Curriculum Vitae.

Michele Carbonelli, MD
Studio Oculistico d’Azeglio, Piazza Galileo 6, 40123 Bologna, 0516493203
Neurology Unit, Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bellaria Hospital, 40139, Bologna
Studio Ocuvis, via Missirini 11, 47922 Rimini, Italy 3406509088
PMC Europe citations

Benson Chen, MBChB, MSc (Clinical Neurology), PhD (Clinical Neurosciences)
Senior Research Fellow, Department of Medicine, University of Auckland
Senior Medical Officer, Department of Neurology, Auckland City Hospital, Te Whatu Ora Te Toka Tumai, 2 Park Road, Grafton, Auckland 1023, New Zealand
University of Auckland profile
Curriculum Vitae.

Community

We recommend having a look at some like minded and affiliated sites who cooperate to find help and fund research on LHON.

Update history

Last edited: 6 August 2026