Who We Are2019-11-22T13:54:43-05:00

The Choroideremia Research Foundation (CRF) is an international not-for-profit organization dedicated to supporting the Choroideremia community. Choroideremia (CHM) is a rare inherited disease that causes progressive loss of vision and blindness, mainly affects males, and that as yet, has no treatment. Vision loss and blindness caused by Choroideremia impacts patients’ and families’ lives in many ways. There are an estimated 6,600 affected male CHMers in the United States.

Choroideremia Research Foundation logo icon in blue

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.

CRF was granted IRS nonprofit status in 2000 and has funded over $2.5 million in research on causes and potential cures for Choroideremia, some of which has led to the development of human clinical trials that are currently in progress. The organization hosts two-day biennial patient and family conferences for 300+ attendees, as well as research/scientific symposia on alternating years, and offers one-day regional meetings at various locations internationally several times per year. CRF hosts the only international CHM patient registry at CHMregistry.org. The organization also advocates for patients legislatively, provides education for medical professionals, and offers information and support programs for patients and family members.

CRF History timeline

Board

Staff

Advisors

Board of Directors

Neal Bench headshot

Neal Bench, President

Chapel Hill, North Carolina

John Trott headshot

John Trott, 1st Vice President

Westfield, New Jersey

Michael Mullen headshot
Tara Cassidy-Driscoll headshot

Tara Cassidy-Driscoll, Treasurer

Swampscott, Massachusetts

Brian Mayer headshot

Brian Mayer, Secretary

Brookfield, Illinois

Officers At-Large

Chris Moen, MD headshot

Chris Moen, MD

Wilmington, Delaware

Jason McKinney headshot

Jason McKinney

Gilmer, Texas

John Oster headshot

John Oster

Rochester, New York

Directors

Susan DeVoe headshot

Susan DeVoe

New Jersey

Tom Driscoll, Esq. headshot

Tom Driscoll, Esq.

Swampscott, Massachusetts

Tim Galvin, PhD headshot

Tim Galvin, PhD

Australia

Sue Kazmierczak headshot

Sue Kazmierczak

Hammond, Wisconsin

Michael Langsfeld headshot

Michael Langsfeld

Germany

Dan Peterson headshot

Dan Peterson
Trimont, Minnesota

Bob Pettipaw headshot

Bob Pettipaw

Sublimity, Oregon

Angela Ricketts headshot

Angela Ricketts

St. Louis, Missouri

Craig Rowley headshot

Craig Rowley

Jay, Maine

Stephanie Sims, MD headshot

Stephanie Sims, MD

Jacksonville, Florida

Choroideremia Research Foundation Staff

Beth Foss headshot
Eric Hartman headshot
Cory MacDonald headshot
Kathi Wagner headshot

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, Massachusetts

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.
23 East Brundreth Street
Springfield, MA 01109-2110

Phone
(800) 210-0233

Email
E-mail the CRF

International Contacts
Australia
,
Email Tim Galvin
United Kingdom, Email Emma Salisbury
France, Email Cecile du Colombier
Canada, Email Robert Hillier
New Zealand, Email Fraser Alexander
Germany, Email Michael Laengsfeld

Publications

Below please find links to several printed and electronic resources that the CRF has available. Please contact Cory MacDonald should you wish to request larger quantities of these documents in print.

2018 Annual Report

CRF 2018 Annual Report

Informative Brochure

CHM vs RP

Financials

The CRF is committed to the highest level of transparency and is pleased to share its most recent audits, IRS Form 990’s and Strategic Plan.

IRS Form 990

CRF Audits

Strategic Plan

CRF Strategic Plan

Press Releases

DONATE

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