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 $350,000 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.
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.
Board of Directors
Bob Hillier, President
Mark Huyser-Wierenga, Vice-President
David Furgoch, Treasurer
Martha Hillier, Secretary
To view the American Board of Directors, please visit our American website here.
Science Advisory Board
Ian Macdonald, MD (chair)
Professor, Department of Medical Genetics, University of Alberta
Edmonton, Alberta, Canada
Tomas Aleman, MD
Associate Professor of Ophthalmology at the Hospital of the University of Pennsylvania, Perelman School of Medicine, University of Pennsylvania
Kapil Bharti, PhD
Senior Investigator, Ocular and Stem Cell Translational Research Unit, National Institutes of Health, Intramural Research Program
Sanford Boye, MS
Associate Scientist, Department of Ophthalmology, Shannon E. Boye Laboratory, University of Florida Health
Shannon Boye, PhD
Associate Professor, Department of Ophthalmology, Shannon E. Boye Laboratory, University of Florida Health
Frans Cremers, PhD
Professor, Ophthalmogenetics, Department of Human Genetics and Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center
Jacque Duncan, MD
Professor in Ophthalmology, University of California San Francisco
San Francisco, California
Rachel Huckfeldt, MD, PhD
Associate Surgeon and Director, Inherited Retinal Degenerations Fellowship, Massachusetts Eye and Ear; Assistant Professor of Ophthalmology, Harvard Medical School
Alex Iannaccone, MD, MS, FARVO
Director, Center for Retinal Degenerations and Ophthalmic Genetic Diseases, and Professor, Ophthalmology, Duke University Department of Ophthalmology
Durham, North Carolina
Mark Pennesi, MD, PhD
Assistant Professor in Ophthalmic Genetics, Oregon Health and Science University (OHSU) Casey Eye Institute
Stephen Tsang, MD, PhD
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
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
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
The Press Releases below have been issued by the US Choroideremia Research Foundation with whom we partner and liaise with on a regular basis.
The search for a cure to CHM is not possible without our generous supporters.