Our Challenges Don’t Define Us.
Our Actions Do.
The Choroideremia Research Foundation (CRF) is the largest organization in the world focused on the search for a cure for choroideremia (CHM). Our mission is to raise funds in support of scientific research leading to a treatment or cure of choroideremia, a hereditary retinal-degenerative disease that causes blindness; to educate people affected by the disease; and to inform the public.
Founded in 2000, a small group of individuals affected with CHM formed the CRF to make a difference for themselves, their families and the many others living with this disease. There are an estimated 6,600 affected male CHMers in the United States.
Our Achievements and History
CRF has funded over $4.5 million in research on the causes and potential cures for choroideremia since being granted nonprofit status in 2000.
The organization hosts regular conferences for patients and families as well as scientific symposia for researchers and clinicians. It also offers one-day regional meetings several times a year around the world. Webinars and interactive online chats are offered (and recorded) several times monthly on topics such as emotional support, research, assistive technology, clinical trials and genetic testing.
In August 2021, the CRF spearheaded the launch of the International Choroideremia Research Network (ICRN), a global alliance of researchers from around the world who are working in concert to accelerate scientific knowledge about CHM. The network is composed of over 90 multi-disciplinary vision professionals with varied experiences, backgrounds, and interests from 25 countries.
CRF was conceived by a small group of patients in 1999. It formally established nonprofit status in 2000 and began funding research in 2002. A few of CRF’s first early research projects included establishment of a CHM mouse model, creating induced pluripotent stem cell (iPSC) models, formation of a human CHM cell biobank, and support of several pre-clinical gene therapy research studies which ultimately led to launch of three clinical trials.
CRF is now exploring collaborations and/or funding development of a CHM pig model, possible pharmaceutical therapies, gene therapy, optogenetics (light sensing), neuroprotection (to delay progression), RNA and DNA editing, stem cell therapy, sight replacement therapies, transplantation, assistive/bionic technologies, and understanding genetics and phenotypes (characteristics and variations) of CHM cells and how these differences may affect progression and outcomes.
Our Board of Directors
Neal Bench, MBA, CPA | President
Chapel Hill, NC – Retired from manufacturing finance. Actively volunteers on several nonprofit committees & boards
John Trott, MBA | 1st Vice-President
Westfield, NJ – Retired pharmaceutical executive
Michael Mullen | 2nd Vice-President
Carmel, Indiana – Senior VP of Investments, Portfolio Management Director at Morgan Stanley
Kayla Schiller | Treasurer
Claflin, Kansas – Senior Tax Manager at GE
Brian Mayer | Secretary
Brookfield, Illinois – Customer Care Manager at Ace Hardware Corp
Tara Cassidy-Driscoll | At-Large
Swampscott, Massachusetts – Owner and CEO of Cassidy Insurance
Stephanie Sims, MD | At-Large
Jacksonville, Florida – Child and Adolescent Psychiatrist, Baptist Medical Center
Champaign, Illinois – Retired Senior Research Analyst, Parkland College
Naama Goldman-Einhorn, PhD
Tel-Aviv, Israel – Clinical psychologist
New York, New York – Founder, Womanity Project and Womanity Play
Ontario, Canada – Retired hydrogeologist, a founding board member of the CRF
Friedberg/Hessen, Germany – CEO at DVBS, VP at Commerzbank AG
Jason McKinney, MBA
Gilmer, Texas – Former restauranteur & City Councilman in Colfax, CA, a founding board member of the CRF
Rochester, New York – Real Estate Agent
Kirkland, Washington – Senior VP of Cybersecurity Strategy, Arqit
New York, New York – Senior Software Engineer, MasterCard
John-Ross Rizzo, MD
New York, New York – Associate Professor, NYU Langone Medical Center, Dept. of Rehabilitation Medicine and Dept of Neurology
Jay, Maine – Workforce Management Analyst at WEX, Inc
Worcester, Massachusetts – VP of Sales for Atlas Distributing
Choroideremia Research Foundation Staff
Kathi Wagner | Executive Director; Tampa, Florida
Reagan Devinney | Digital Marketing Coordinator; Olathe, Kansas
Beth Foss | Director of Operations; Lancaster County, Pennsylvania
Eric Hartman | Director of Advocacy; New Orleans, Louisiana
Cory MacDonald | Engagement Director; Springfield, Massachusetts
Our Science Advisory Board
Tomas Aleman, MD | Professional webpage
Director of the Retinal Structure and Function Laboratory, Perelman Center for Advanced Medicine, Perelman School of Medicine, University of Pennsylvania
Brian Ballios, MD, PhD, FRCSC, DABO | Professional webpage
Assistant Professor in the Department of Ophthalmology and Vision Sciences at the University of Toronto
Malia Edwards, PhD | Professional webpage
Assistant Professor of Ophthalmology, Johns Hopkins Medicine, Baltimore
Rachel Huckfeldt, MD, PhD | Professional webpage
Academic Vice Chair, Science Advisory Board, Choroideremia Research Foundation; Physician and Surgeon and Director, Inherited Retinal Degenerations Fellowship, Massachusetts Eye and Ear; Assistant Professor of Ophthalmology, Harvard Medical School
Alex Iannaccone, MD, MS, FARVO | Professional webpage
Director, Center for Retinal Degenerations and Ophthalmic Genetic Diseases, and Professor, Ophthalmology, Duke University Department of Ophthalmology
Durham, North Carolina
Jasleen Kaur Jolly, DPhil, MSc, BSc (Hons), MCOptom | Professional webpage
Senior Clinical Research Fellow, Oxford Neuroscience, Cambridge, UK
Maureen McCall, PhD | Professional webpage
Academic Chair, Science Advisory Board, Choroideremia Research Foundation; Professor & Vice Chair for Research, Department of Ophthalmology & Visual Sciences, School of Medicine, University of Louisville
Chris Moen, MD | Professional webpage
Chief Medical Officer, Choroideremia Research Foundation; Medical Director, NaviHealth
Mark Pennesi, MD, PhD | Professional webpage
Division Chief, Ophthalmic Genetics, Professor of Ophthalmology, School of Medicine, Oregon Health and Science University (OHSU) Casey Eye Institute
Ruchi Sharma, PhD | Professional webpage
Senior Staff Scientist, Ophthalmic Genetics and Visual Function Branch, National Eye Institute
Divya Sinha, PhD | Professional webpage
Scientist I, David Gamm Laboratory, Waisman Center, University of Wisconsin- Madison
Jess Thompson, MD, MS | Professional webpage
Chair, Science Advisory Board, Choroideremia Research Foundation; Cardiothoracic Surgeon, Yavapai Cardiac Surgery
Stephen Tsang, MD, PhD | Professional webpage
Professor of Ophthalmology and Professor of Pathology and Cell Biology, Columbia University Department of Pathology and Cell Biology
New York, New York
Ajoy Vincent, MBBS, MS | Professional webpage
Staff Ophthalmologist, Ophthalmology and Vision Sciences; Medical Director, Visual Electrophysiology Unit; Associate Scientist Genetics and Genome Biology Research Institute, The Hospital for Sick Children
Toronto, Ontario, Canada
Michael Young, PhD, FARVO | Professional webpage
Associate Professor of Ophthalmology, Co-Director, Ocular Regenerative Medicine Institute; Director, Minda de Gunzburg Center for Retinal Regeneration, Harvard Medical School; Associate Scientist, Schepens Eye Research Institute of Massachusetts Eye and Ear
Our Emeritus Science Advisory Board Members
Ian MacDonald MSc, MD, CM | Professional webpage
Professor Emeritus in the Department of Ophthalmology and Visual Sciences, University of Alberta and past Chair of the Department
If you would like to receive print copies of any of our publications, please contact Cory MacDonald.
CRF 2022 Annual Report (PDF)
Saving Sight: The Effects and Symptoms of Choroideremia (PDF brochure)
Saving Sight is our Vision (PDF brochure)
CHM Information & Comparison to RP (Powerpoint presentation)
Our Financial Information
Contributions given to CRF are carefully managed to provide the greatest benefit to those research efforts receiving its funds.
CRF is audited on an annual basis. An Investment Committee comprised of experienced financial industry volunteers oversees the management of funds.