Our Challenges Don’t Define Us.
Our Actions Do.

A foundation. A family. 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.

Saving sight is our vision. Building hope is how we’ll get there.

Our Achievements and History

CRF has funded over $6 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 nearly 140 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.

Directors

Brian Counter
Champaign, Illinois – Retired, higher education research analyst

Thomas Driscoll
Swampscott, Massachusetts – Business Development Representative, Kantata

Naama Goldman-Einhorn, PhD
Tel-Aviv, Israel – Clinical psychologist

Aurelie Harp
New York, New York – Founder, Womanity Project and Womanity Play

Bob Hillier
Ontario, Canada – Retired hydrogeologist, a founding board member of the CRF

Michael Laengsfeld
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

Rachel Oster
Rochester, New York – Real Estate Agent, Re/Max Realty Group

Yamil Rosete Rodriguez
New York, New York – Senior Software Engineer, MasterCard

John-Ross Rizzo, MD
New York, New York – Ilse Melamid Associate Professor of Rehabilitation Medicine, Department of Rehabilitation Medicine and Associate Professor, Department of Neurology, NYU Langone Health

Jon Salois
Worcester, Massachusetts – Vice President of Sales for Atlas Distributing

Kayla Schiller
Claflin, Kansas – Senior Tax Manager, GE

Sarah Thompson
Prescott, Arizona –  Full-time mom and community volunteer

Our Science Advisory Board

Lauren Ayton,  B. Optom, PhD, GCOT, FAAO  | Professional webpage
Principal Research Fellow, Optometry and Vision Sciences at the University of Melbourne
Melbourne, Australia

Brian Ballios, MD, PhD, FRCSC, DABO | Professional webpage
Assistant Professor in the Department of Ophthalmology and Vision Sciences at the University of Toronto
Toronto, Canada

Kathleen Boesze-Battaglia, PhD | Professional webpage
Professor, Assistant Dean for Academic Initiatives, Department of Basic and Translational Sciences, University of Pennsylvania, School of Dental Medicine
Philadelphia, Pennsylvania

Kim Edwards, PhD | Professional webpage
Scientist, David Gamm Lab, Waisman Center (VCRGE), University of Wisconsin, Madison
Madison, Wisconsin

Malia Edwards, PhD | Professional webpage
Assistant Professor of Ophthalmology, Johns Hopkins Medicine, Baltimore
Baltimore, Maryland

Rachel Huckfeldt, MD, PhD | Professional webpage
Academic 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
Boston, Massachusetts

Jasleen Kaur Jolly, DPhil, MSc, BSc (Hons), MCOptom | Professional webpage
Associate Professor Vision and Eye Research, Director Jolly Vision Science Limited, Honorary Fellow University of Melbourne
Cambridge, UK

Chris Moen, MD | Professional webpage
Chief Medical Officer, Choroideremia Research Foundation; Medical Director, NaviHealth
Wilmington, Delaware

Ruchi Sharma, PhD | Professional webpage
Senior Staff Scientist, Ophthalmic Genetics and Visual Function Branch, National Eye Institute
Bethesda, Maryland

Dror Sharon, PhD | Professional webpage Cancel
Sharon Lab, Department of Ophthalmology, Hadassah-Hebrew University Medical Center
Jerusalem, Israel

Divya Sinha, PhD | Professional webpage
Scientist I, David Gamm Laboratory, Waisman Center, University of Wisconsin- Madison
Madison, Wisconsin

Jess Thompson, MD, MS | Professional webpage
Chair, Science Advisory Board, Choroideremia Research Foundation; Cardiothoracic Surgeon, Yavapai Cardiac Surgery
Prescott, Arizona

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

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
Alberta, Canada