Who We Are2020-03-21T09:48:22-05:00

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

Advisors

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 headshot

Ian Macdonald, MD (chair)
Professor, Department of Medical Genetics, University of Alberta
Edmonton, Alberta, Canada

Tomas Aleman, MD headshot

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 headshot

Kapil Bharti, PhD
Senior Investigator, Ocular and Stem Cell Translational Research Unit, National Institutes of Health, Intramural Research Program
Bethesda, Maryland

Sanford Boye, MS headshot

Sanford Boye, MS
Associate Scientist, Department of Ophthalmology, Shannon E. Boye Laboratory, University of Florida Health
Gainesville, Florida

Shannon Boye, PhD headshot

Shannon Boye, PhD
Associate Professor, Department of Ophthalmology, Shannon E. Boye Laboratory, University of Florida Health
Gainesville, Florida

Frans Cremers, PhD headshot

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 headshot

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

Rachel Huckfeldt, MD, PhD headshot

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 headshot

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 headshot

Mark Pennesi, MD, PhD
Assistant Professor in Ophthalmic Genetics, Oregon Health and Science University (OHSU) Casey Eye Institute
Portland, Oregon

Stephen Tsang, MD, PhD headshot

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 headshot

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 headshot

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.

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The search for a cure to CHM is not possible without our generous supporters.