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

Chorioderemia Research Foundation Canada Inc was created in August 2004 and granted charitable status the same year. It was created to support the choroideremia community in Canada and be a source for information and raising funds for research. The organization has raised over $750,000 and has levered some of these funds to generate over $1.8 million in Choroideremia specific research.

The first CRFC research funds of $60,000 supported in part the creation of a choroideremia mouse model through the research of Dr. Miguel Seabra at University College, London England. Later funding of $75,000 went to Dr. Ian MacDonald, University of Alberta, for preliminary disease study. This study opened the door to Dr. MacDonald’s second CRFC grant of $125,000 which was partnered with the the FFB and Canadian Institutes of Health Research for a combined grant of $1.5 million.

More recent grants have included partnering with the US organization (CRF) in support of zebra fish studies by Dr. Maria Moosajee at University College, London, England, as well as Dr. David Gamm, University of Wisconsin, US.

Funding decisions are currently made through collaboration with the Canadian directors and US CRF Scientific Board, which includes two Canadian Doctors/Researchers.

The Choroideremia Research Foundation Canada’s overhead is low as all positions are unpaid and staffed completely by volunteers. The CRFC President currently sits as a Board member on the US CRF Board, along with other international representatives.

Our Achievements and History

Together with our sister organization CRF,  over $4.5 million in research has been funded on the causes and potential cures for Choroideremia since being granted nonprofit status in 2000.

Our partner, the CRF, 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 hosts a CHM patient registry.  The organization legislatively advocates for patients nationally and internationally, provides education for medical professionals, and offers information and one-on-one support to patients and family members.

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

Katie Furgoch

Vancouver, BC

Tim Hawnt

Edmonton, AB

CRF Science Advisory Board

Tomas Aleman, MD | Professional webpage
Associate Professor of Ophthalmology at the Hospital of the University of Pennsylvania, Perelman School of Medicine, University of Pennsylvania
Philadelphia, Pennsylvania

Kapil Bharti, PhD | Professional webpage
Senior Investigator, Ocular and Stem Cell Translational Research Unit, National Eye Institute, National Institutes of Health, Intramural Research Program
Bethesda, Massachusetts

Jacque Duncan, MD | Professional webpage
Professor in Ophthalmology, University of California San Francisco
San Francisco, California

Rachel Huckfeldt, MD, PhD | Professional webpage
Associate Surgeon and Director, Inherited Retinal Degenerations Fellowship, Massachusetts Eye and Ear; Assistant Professor of Ophthalmology, Harvard Medical School
Boston, Massachusetts

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

Maureen McCall, PhD | Professional webpage
Professor & Vice Chair for Research, Department of Ophthalmology & Visual Sciences, School of Medicine, University of Louisville
Louisville, Kentucky

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

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
Portland, Oregon

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

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
Boston, Massachusetts