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.
Our Mission
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
Brantford, ON
Mark Huyser-Wierenga, Vice-President
Edmonton, AB
David Furgoch, Treasurer
Arnprior, ON
Martha Hillier, Secretary
Brantford, ON
Directors
Katie Emsley
Vancouver, BC
Tim Hawnt
Edmonton, AB
Sheldon Lewis
Montreal, QC
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
Philadelphia, Pennsylvania
Kapil Bharti, PhD
Senior Investigator, Ocular and Stem Cell Translational Research Unit, National Institutes of Health, Intramural Research Program
Bethesda, Maryland
Sanford Boye, MS
Associate Scientist, Department of Ophthalmology, Shannon E. Boye Laboratory, University of Florida Health
Gainesville, Florida
Shannon Boye, PhD
Associate Professor, Department of Ophthalmology, Shannon E. Boye Laboratory, University of Florida Health
Gainesville, Florida
Frans Cremers, PhD
Professor, Ophthalmogenetics, Department of Human Genetics and Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center
Nijmegen, Netherlands
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
Boston, Massachusetts
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
Portland, Oregon
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
Boston, Massachusetts
Contact Us
Mailing Address
Choroideremia Research Foundation, Inc.
16 Candlewood Drive
Brantford, ON, N3R6A1
Phone
519-758-0847
Email
Email the CRFC
International Contacts
Australia, Email Tim Galvin
United Kingdom, Email Emma Salisbury
France, Email Cecile du Colombier
USA, Email Cory MacDonald
New Zealand, Email Fraser Alexander
Germany, Email Michael Laengsfeld
The Press Releases below have been issued by the US Choroideremia Research Foundation with whom we partner and liaise with on a regular basis.
Choroideremia Research Foundation Holds 2019 International Choroideremia Symposium
On June 6-7, the Choroideremia Research Foundation (CRF) hosted its 2019 International Choroideremia Symposium in Philadelphia, Pennsylvania. With the support of the Center for Advanced Retinal and Ophthalmic Therapeutics at the University of Pennsylvania, CRF developed an
4DMT and ROCHE Expand Ophthalmology Partnership to Develop and Commercialize Multiple AAV Gene Therapy Products
4D Molecular Therapeutics (4DMT), a leader in Therapeutic Vector Evolution for adeno-associated virus (AAV) gene therapy vector discovery and product development, today announced the expansion of its 2016 research agreement with F. Hoffmann-La Roche Ltd and Hoffmann-La
Nightstar Announces First-Ever Phase 3 Choroideremia Gene Therapy Trial
Nightstar Therapeutics has announced the initiation of the company’s STAR Phase 3 registrational trial to study the safety and efficacy of NSR-REP1 in patients with choroideremia. In data from 32 patients treated with NSR-REP1 across four open-label Phase
Nightstar Therapeutics raises $75 Million in IPO to fund Pivotal Phase 3 Gene Therapy Study
Nightstar Therapeutics held it’s Initial Public Offering on Thursday September 28th, raising $75 Million which will be used to advance the company’s gene therapy treatment for Choroideremia along with other Retinal Degenerative Diseases the company is working on. The company,
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