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.
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?
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 has served on the Board of Directors since 2015, currently as First Vice President and as a member of the Executive Committee. He also serves on the Research Committee and Fundraising Committee. John’s areas of expertise include marketing and sales, healthcare policy, and access and international trade. He has worked in the pharmaceutical industry for more than 25 years, mostly in international commercial roles and is Global Marketing Leader for HIV Therapeutics and Vaccines at Janssen Pharmaceuticals (part of Johnson & Johnson). His home is now much quieter with the 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.
The CRFC has raised over $400,000 for CHM research and leveraged those funds to generate over $1.5-million in CHM research including the University of Alberta gene therapy trial at the University of Alberta.
Bob and wife Martha have two adult daughters and live in Brantford, Ontario, Canada.
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. Laengsfeld 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.
Tracey Pretorius leads global efforts to help Microsoft customers benefit from an unparalleled partner network that delivers world-class cloud and AI solutions. She is a member of the Executive Women’s Forum for security, privacy and risk management professionals, an executive sponsor at KPMG’s i-4 Forum for CISO professionals – where she regularly speaks on industry hot topics – as well as a founding member and Chairperson of Microsoft Women in Security (MWiS). Tracey is also on the board of specialist venture capitalist firm Strategic Cyber Ventures (SCV) in an advisory position. Since joining Microsoft, Tracey has led some of the company’s most high-profile perception campaigns and product launches. In her over 20 years of international experience, Tracey has been privileged to lead and implement a number of global programs and has spent considerable time working across Africa, Europe, Middle East and Asia. Proudly South African, Tracey earned her Bachelor of Arts degree in Industrial Psychology and Communications from the University of South Africa. A word nerd, indoor cycler, art enthusiast, and cyber culture aficionado, Tracey is always interested in expanding her rich and diverse global network.
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.
Jon Salois is vice president of sales for Atlas Distributing, a beer and beverage distributor servicing central Massachusetts. He has enjoyed working in the beer industry since graduating from Boston College Carrol School of Management in 2008. A lifelong member of CRF, Jon is passionate about raising awareness of Choroideremia, supporting his local community, and running. Jon lives with his wife Rachel and their daughter Claire in Worcester, MA.
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.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
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
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
What’s new
CHOROIDEREMIA RESEARCH FOUNDATION FUNDS GROUND-BREAKING RESEARCH ON TWO BROTHERS WITH CHM
Stacey Hume, PhD, FCCMG, Molecular Geneticist and Associate Professor in the Department of Medical Genetics at University of Alberta One Brother is Symptomatic while the Other is Not SPRINGFIELD, MASSACHUSETTS, UNITED STATES, August 4, 2020 /EINPresswire.com/ --
GIVING HOPE TO PEOPLE IN DARKNESS
The Choroideremia Research Foundation gave me hope and a sense of community.”— Brent Rische, CRF member The Choroideremia Research Foundations Provides Education and Community about a Little Known Degenerative Eye Disease SPRINGFIELD, MASSACHUSETTS, UNITED STATES, August 7,
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