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.
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 $3 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.
Board of Directors
Neal joined the CRF in 2012 and currently sits as Board President. He has served on the board, the Executive Committee, and as Vice President along with serving on a number of CRF committees. Currently, Neal is a member of the Chapel Hill Planning Commission and sits on the Board of both the Friends of Chapel Hill Parks & Recreation and the UNC Hope Gardens. He and his wife Jeanette attend and support Carolina Performing Arts and Playmakers Repertory Theater, along with the NC Symphony, the NC Museum of Art and the Carrboro Arts Center. They have two adult sons living in Salt Lake City, Utah.
John is the Global Marketing Leader for HIV products at Janssen Pharamaceuticals (part of Johnson & Johnson). He has worked in the pharmaceutical industry for more than 25 years, mostly in international commercial roles. John’s areas of expertise include pharmaceutical marketing and sales, pharmaceutical development, healthcare policy and access and international trade. John has served on the Board of Directors since 2015, currently as First Vice President and member of the Executive Committee. He also serves on the Research, Development & Regulatory and Fundraising Committees. His home is now much quieter with youngest of three sons away at college.
Mike is a Senior Vice President of Investments and a Portfolio Management Director with Morgan Stanley. He has been with the firm for over 28 years. Mike started serving on the CRF Board of Directors in 2016 and joined the Executive Committee in 2018. Mike sits on the Research, Development and Regulatory Committee and participated in the Million Dollar Bike Ride fundraiser sponsored by the University of Pennsylvania. He also serves on the Board of the Cornea Research Foundation of America based in Indianapolis. He keeps active with his three boys, coaching youth hockey along with playing in a men’s league.
Tara is the owner and CEO of Cassidy Insurance based in Swampscott, Massachusetts. She has been a member of the Board since 2017 and is currently serving as Treasurer. Tara and her family have carried out fundraisers and advocated for the CRF in a number of venues. She’s involved in her community serving as a mentor and coach & is the mother of three children, two of whom have CHM.
Brian is Customer Care Manager at Ace Hardware Corporation, a company he has worked at for the last 21 years. Brian has been a member of the CRF for over 10 years, joining the Board in 2018. He currently sits on the Executive Committee and Chairs the Publication and Communication Committee.Officers At-Large
Chris works as Medical Director for NaviHealth. His areas of expertise are utilization management, patient care, health care & hospital management, medical education and nonprofit management. Chris has served on the Board of Directors since 2007, most recently as past-President from 2013-2018. Currently, Chris serves on the Research, Development & Regulatory Committee, and as CRF’s Chief Medical Officer. His home remains busy as he and his wife have four active sons, all involved in various school and sports activities.
John is the owner and President of Edgemere Development. He is one of the founding members of the Choroideremia Research Foundation and has held many different positions since its inception in 2000. John currently sits on the Nominating & Personnel Committee as well as Executive Committee. One of his passions is music, playing piano in a variety of genres, especially enjoying jazz.
Dr. Stephanie Sims has been a member of the CRF Board of Directors since 2016. She works for the University of Florida Department of Psychiatry in Jacksonville where she is an assistant professor and clinician. She lives in Jacksonville with her husband (Justin) and their son (Sullivan). She is a carrier of CHM.Directors
Bob was a founding board member of the CRF and has been the president of the Choroideremia Research Foundation Canada (CRFC) since its inception in 2004. For 21 years, Bob worked as a hydrogeologist. Other career activities included farming (ginseng producer) and managing a small training and service company. For over fifteen years he was a member of the Grand River Conservation Authority representing his home town of Brantford, Ontario.
Michael has worked more than 30 years in the finance sector of various investment banks. He also works as a patient advocate for various organizations globally including Retina International, Pro Retina and the European Patient Advocate ERN-EYE. Michael has served on the Board of Directors since 2015 and sits on the International Committee. Mr. Langsfeld has coordinated three CHM conferences in Germany.
Jason is one of the founding members of the Choroideremia Research Foundation. He returned to the Board in 2018 and sits on the Executive Committee, and the Patient Engagement and Conference Committee. Jason has worked in various settings including Systems Engineering, Consumer Lending & Finance, Sales and Restaurant Management. He’s served on his local City Council, volunteered with the Boy Scouts of America, Lions Club, and has conducted fundraising efforts for CRF. Jason lives with his wife and two children and enjoys gardening.
Angela joined CRF as a fundraising volunteer in 2019 and immediately offered to provide her insight, skillset and energy to the Board of Directors. Angela is a Co-Founder and Director of Better Life Maids, based in St. Louis. Her professional background resides in sales, customer service, public speaking and motivational development. Angela and her family have worked with the Foundation Fighting Blindness as well as hosting a large trivia fundraising event for CRF. Angela and her husband Matt have three children, one having CHM.
John-Ross (JR) Rizzo, M.D., M.S.C.I., is a physician-scientist at NYU Langone Medical Center’s Rusk Rehabilitation, where he serves as Director of Technology and Innovation for Physical Medicine and Rehabilitation with cross-appointments in the Department of Neurology and the Departments of Biomedical & Mechanical and Aerospace Engineering (NYU-Tandon School of Engineering). He is also the Associate Director of Healthcare for the renowned NYU Wireless Laboratory in the Department of Electrical and Computer Engineering at NYU-Tandon. He leads the Visuomotor Integration Laboratory (VMIL), where his team focuses on eye-hand coordination, as it relates to acquired brain injury (ABI), and the REACTIV Laboratory (Rehabilitation Engineering Alliance and Center Transforming Low Vision), where his team focuses on advanced wearables for the sensory deprived and benefits from his own personal experiences with vision loss. He is also the Founder and Chief Medical Advisor of Tactile Navigation Tools, LLC, where he and his team work incessantly to disrupt the assistive technology space for those with visual impairments of all kinds, enhancing human capabilities. He has a wonderful wife and two amazing boys who are his greatest joys and loves.
Kayla Schiller is currently Senior Tax Manager for GE, and was previously employed as a Senior Tax Accountant for Swiss Re and Ernst and Young. Ms. Schiller attended Kansas State University and grew up on a small family farm in central Kansas. She enjoys participating and training for different athletic events to keep busy, and has participated as a fundraiser for Team CHM.Choroideremia Research Foundation Staff
Kathi has over 25 years of nonprofit fundraising and management experience including over 10 years in the rare disease space as Director of Development for both the Cholanglocarcinoma Foundation and the American Brain Tumor Association. She is a former board member of the West Suburban Philanthropic Network, the Chicago Chapter of the Association of Fundraising Professionals and the Suburban Chicago Planned Giving Council. Kathi lives in the suburbs of Chicago with her husband, has two adult children and enjoys music and attending concerts.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, Massachusetts
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
Chris Moen, MD
Chief Medical Officer, Choroideremia Research Foundation
Medical Director, NaviHealth
Wilmington, Delaware
Jess Thompson, MD, MS
Chair, Research Committee, 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
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.
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.
Press Releases
CRF FUNDS EXPLORATORY RESEARCH PROPOSALS COMMENCING SUMMER 2020
Abigail Fahim to Study the Impact of RPE Proteins on Choroids "Understanding the relationship between RPE and choroids is vital to finding treatment for choroideremia, or even better, a cure.”— Neal Bench, CRF board president SPRINGFIELD, MASSACHUSETTS,
CRF ANNOUNCES NEW RESEARCH AWARD TO STUDY THE EFFICACY OF NOVEL THERAPEUTICS
Dr. Yi Zhai receives the Oster Family Research Award "This important research will provide a best-in-class way to evaluate the impact of future scientific research into choroideremia.” — Neal Bench, CRF board president SPRINGFIELD, MASSACHUSETTS, UNITED STATES,
CHOROIDEREMIA RESEARCH FOUNDATION STRENGTHENS LEADERSHIP
Four New Members Join the Board of Directors Springfield, MA., July 16, 2020 The Choroideremia Research Foundation (CRF) is pleased to announce the appointment of four new members to its board of directors. These members fill vacancies
Kim Edwards Receives 1st Annual CRF Randy Wheelock Research Award
Choroideremia Research Foundation Awards $50,000 Grant in New Program Springfield, MA., May 26, 2020 The Choroideremia Research Foundation (CRF) is pleased to announce that Kim Edwards is the recipient of the 1st Annual CRF Randy Wheelock Research
Choroideremia Research Foundation Announces Funding Grant for CHM Research
Dr. David Williams at UCLA to begin mitochondrial defects study to help find a cure for Choroideremia Springfield, MA., March 06, 2020 The Choroideremia Research Foundation recently announced a grant award for $61,000 to David Williams, PhD,
Cyclist with Blinding Eye Disease Biking 3,000 Miles Coast-to-Coast to Increase Choroideremia Awareness and Research Funding
Waseca, MN – December 15, 2019 Jason Folie, a 35-year-old man from Waseca, MN, is going blind, but his vision is saving sight. Folie was diagnosed with Choroideremia (CHM), an X-linked recessive retinal degenerative disease that affects