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, 2020 /EINPresswire.com
/ — The Choroideremia Research Foundation (CRF) is celebrating 20 years of tirelessly improving the well-being of people living with choroideremia, a degenerative eye disease that mainly affects males and is little known by people. Whether it’s research, education, life-enhancing resources or access to clinical trials, the foundation is a champion and advocate for this community of roughly 6,600 people in the United States.
Choroideremia 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 one’s visual field being the earliest noticeable effects, eventually progressing to complete blindness. There are currently no approved treatments for choroideremia.
The CRF has positively affected the lives of members in countless, very personal ways. Brent Rische, 26, was diagnosed when he was six-years old. Instead of given hope, he was informed of the many activities and life milestones he would miss, like playing sports and driving a car. That’s a lot for anyone, let alone a child, to accept. But with a new, patient-advocate specialist, his world changed. Brent was introduced to the CRF, learned about cutting-edge science to find a treatment and eventually qualified to participate in a gene replacement study. Today, Brent is two-plus years into a clinical trial and optimistic about his future quality of life. “I was scared and basically alone,” says Rische. “But the Choroideremia Research Foundation gave me hope and a sense of community where I got to meet and get support from so many people. When I meet new members today, now I can be the one to give them hope.” Read more