August 14, 2022, 08:09 GMT
Top Researchers in the Field from Around the World Gather with Patients and Families
We are thrilled with the success of this year’s conferences, bringing patients, families, and researchers together for three days of learning and community building.”
— Neal Bench, CRF board president
SPRINGFIELD, MA, UNITED STATES /EINPresswire.com/ — The Choroideremia Research Foundation (CRF) 2022 International Conference returned to Rochester, New York this past June, shining a bright light on research and advancements in the pursuit of finding a cure for choroideremia (CHM). Over 165 people from 9 countries, including representatives from the US, Canada, Spain, Germany, The Netherlands, Aruba, London, France, and Portugal, gathered to attend education sessions and a vendor exhibit hall, meet with genetic testing counselors, and build community with fellow CHM patients and family members.
“Much has been accomplished in the past 4 years and it was wonderful to have the opportunity to share research updates face-to-face as well as reunite CHM friends and families together again,” Kathi Wagner, Executive Director, Choroideremia Research Foundation, said.
Research took centerstage with many of the leading scientists in the CHM research field presenting their latest finding as well as future endeavors, including the following presentations:
- WHAT IS CHM? WHERE HAVE WE BEEN AND WHERE ARE WE GOING by Vasiliki Kalatzis, PhD, Research Director, Inserm, University of Montpellier, France
- tRNA and GENETIC ENGINEERING/STEM CELLS by Dr. David Gamm, MD, PhD, Professor of Ophthalmology and Visual Sciences, University of Wisconsin-Madison UW-Madison
- THE FUTURE OF STEM CELL THERAPY FOR CHM by Brian Ballios, MD, PhD, FRCSC, University Health Network; Donald K. Johnson Eye Institute, Toronto, Canada
- ADVANCES IN ASSISTIVE TECHNOLOGY by Dr. Rizzo, MD, Director of the Visuomotor Integration Laboratory (VMIL) and the REACTIV Laboratory (Rehabilitation Engineering Alliance and Center Transforming Low Vision) at NYU Langone Medical Center’s Rusk Institute of Rehabilitation Medicine, New York
In addition, attendees benefited from speakers discussing social services on Orientation & Mobility Specialist training, disability rights, workplace accommodations, and improving daily quality of life with vision loss. Lastly, community building is also a major reason for people to attend because there are only an estimated 6,600 people in the United States with CHM (50,000 worldwide). The conference provides a rare, in-person opportunity for those living with CHM and their families to reconnect with and make new friends.
“We are thrilled with the success of this year’s conferences, bringing patients, families, and researchers together for three days of learning and community building,” said Neal Bench, CRF board president.” When the CRF was founded 22 years ago, there was no research being conducted and no hope. As we look to the future, we are optimistic and confident about finding treatment and eventually, a cure.”
For more information on the 2022 CRF International Conference or the foundation’s research activities and community services, please visit www.CureCHM.org.
Choroideremia (CHM) is a rare inherited form of blindness affecting approximately 1 in 50,000 people. Due to its x-linked inheritance pattern males are most severely affected with females usually experiencing much milder visual impairment. Symptoms begin in early childhood with night blindness and restriction of visual field being the earliest noticeable effects, eventually progressing to complete blindness. An estimated 6,000 people in the United States and 10,000 in the European Union are impacted by Choroideremia. There are currently no approved treatments for Choroideremia. For more information, visit curechm.org
About the Choroideremia Research Foundation Inc.
The Choroideremia Research Foundation was founded in 2000 as an international fundraising and patient advocacy organization to stimulate research on CHM. Since its inception, the CRF has provided over $2.5 million in research awards and is the largest financial supporter of CHM research worldwide. Research funded by the CRF has led to the development of a CHM animal model, the pre-clinical production of gene therapy vectors currently in clinical trials, and the CRF Biobank which stores tissue and stem cell samples donated by CHM patients. For more information, visit curechm.org