Who We Are2021-10-17T21:57:08-05:00

The Choroideremia Research Foundation (CRF) is an international not-for-profit organization dedicated to supporting the choroideremia (CHM) community. 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.

What’s new

CRF has funded nearly $4 million in research on the causes and potential cures for choroideremia since being granted nonprofit status in 2000.

The organization hosts a two-day conference for patients and family every other year and a research/scientific symposium on alternating years. 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.

CRF hosts a CHM patient registry at https://www.curechm.org/chm-patient-registry/  The organization advocates for patients legislatively nationally and internationally, provides education for medical professionals, and offers information and one-on-one support to patients and family members.

To learn more about CRF’s 2020 accomplishments, please view our “State of the CRF” webinar: https://www.youtube.com/watch?v=JVad_8N0KnM&t=7s

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

Kayla Schiller
Brian Mayer headshot

Brian Mayer, Secretary

Brookfield, Illinois

Officers At-Large

Chris Moen, MD headshot

Chris Moen, MD

Wilmington, Delaware

John Oster headshot

John Oster

Rochester, New York

Stephanie Sims, MD headshot

Stephanie Sims, MD

Jacksonville, Florida

Directors

Bob Hillier

Ontario, Canada

Michael Langsfeld headshot

Michael Laengsfeld

Friedberg/Hessen, Germany

Jason McKinney headshot

Jason McKinney

Gilmer, Texas

Dan Peterson headshot

Dan Peterson

Trimont, Minnesota

Tracey Pretorius

Tracey Pretorius

Kirkland, Washington

Angela Ricketts headshot

Angela Ricketts

St. Louis, Missouri

John-Ross Rizzo

John-Ross Rizzo, MD

New York, New York

Craig Rowley headshot

Craig Rowley

Jay, Maine

Jon Salois Jr.

Jon Salois

Worcester, Massachusetts

Kayla Schiller

Kayla Schiller

Claflin, Kansas

Kayla Schiller

Kayla Schiller

Claflin, Kansas

The Choroideremia Research Foundation has adopted a conflict-of-interest policy that prohibits or limits business transactions with board members and requires board members to disclose potential conflicts to promote transparency.

Choroideremia Research Foundation Staff

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

Science Advisory Board

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

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

Maureen McCall, PhD

Professor & Vice Chair for Research, Department of Ophthalmology & Visual Sciences, School of Medicine, University of Louisville
Louisville, Kentucky

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

Chris Moen, MD headshot

Chris Moen, MD
Chief Medical Officer, Choroideremia Research Foundation
Medical Director, NaviHealth
Wilmington, Delaware

Jess Thompson, MD

Jess Thompson, MD, MS
Chair, Science Advisory Board, Choroideremia Research Foundation
Yavapai Cardiac Surgery
Prescott, Arizona

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

Please contact Cory MacDonald to request print copies.

2020 Annual Report

What Is Choroideremia Brochure

View the What Is Choroideremia Brochure PDF

CRF Brochure

View the CRF Brochure PDF

CHM vs. RP Comparisons PowerPoint

Choroideremia Research Foundation icon

Financials

IRS Form 990

CRF Audits

Annual Report

Strategic Plan

What’s new

CHOROIDEREMIA RESEARCH FOUNDATION FUNDS RESEARCH TO UNDERSTAND RETINAL NERVE CELL DEGENERATION IN VISION LOSS DISEASES LIKE CHOROIDEREMIA

May 19th, 2021|Tags: , , , , , , , , , |

Dr. Jasleen Jolly receives the Ricketts Family Research Award to Investigate Rare Inherited Retinal Disorders   SPRINGFIELD, MA. – March 3, 2021 – The Choroideremia Research Foundation (CRF) is pleased to announce the recipient of the Ricketts

CHOROIDEREMIA RESEARCH FOUNDATION INVITES RESEARCH PROPOSALS FOR THE ANNUAL RANDY WHEELOCK RESEARCH AWARD

May 19th, 2021|Tags: , , , , , , , |

Proposals related to finding a cure for CHM are due by March 31, 2021 SPRINGFIELD, MA. – February 3, 2021 – The Choroideremia Research Foundation (CRF) is pleased to welcome proposal submissions for the Annual Randy Wheelock

CHOROIDEREMIA RESEARCH FOUNDATION SEEKS TO UNDERSTAND A CRUCIAL RETINAL PROTEIN THAT CAUSES VISION LOSS AND BLINDNESS WHEN MUTATED

May 19th, 2021|Tags: , , , , , , , , , , |

Dr. David Gamm Receives the Latest Research Award from CRF to Investigate Rare Inherited Retinal Disorders SPRINGFIELD, MA. – March 26, 2021 – The Choroideremia Research Foundation (CRF) is pleased to announce the recipient of the Auburn

CHOROIDEREMIA RESEARCH FOUNDATION SEEKS TO UNDERSTAND A DISEASE RELATED TO RETINITIS PIGMENTOSA CAUSING VISION LOSS

May 19th, 2021|Tags: , , , , , , , |

Dr. Vasiliki Kalatzis receives the Gleason Family Research Award to Investigate a Rare Inherited Retinal Disease SPRINGFIELD, MA. – February 16, 2021 – The Choroideremia Research Foundation (CRF) is pleased to announce the recipient of the Gleason

CHOROIDEREMIA RESEARCH FOUNDATION SUPPORTS NEW RESEARCH TO EXPAND KNOWLEDGE OF THIS RARE INHERITED RETINAL DISEASE

May 19th, 2021|Tags: , , , , , , , |

Dr. Mariya Moosajee receives the Salois Family Research Award SPRINGFIELD, MA. – February 1, 2021 – The Choroideremia Research Foundation (CRF) is pleased to announce funding for its first research study in 2021 to Mariya Moosajee, MBBS,

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

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