According to a story from Valdosta Daily Times, a collaboration between the biotechnology company ReflectionBio® and the nonprofit organization Invincible Vision is taking aim at the rare disease Bietti’s crystalline dystrophy, an eye disease that is estimated to impact 100,000 people around the world. The groups have recently started a fundraising and awareness campaign called BY PATIENTS, FOR PATIENTS™. This campaign is hoping to raise at least $100,000 by the end of the year.
About Bietti’s Crystalline Dystrophy
Bietti’s crystalline dystrophy (BCD) is a rare eye disease that can cause progressive vision loss. It is more common in people of Asian ancestry. The disorder is inherited in an autosomal recessive pattern and is linked to mutations impacting the CYP4V2 gene. Effects of this disease usually begin in the teens or twenties, with progression and severity varying widely. Symptoms of Bietti’s crystalline dystrophy include the appearance of crystals in the cornea, loss of acuity, progressive atrophy affecting the retina, choroid, and choriocapillaries, constricted visual field, nightblindness, and shiny, yellow deposits on the retina. At this juncture, there is no cure or recommended treatment for this illness. Most patients do not lose their eyesight entirely. There is an urgent need for a disease-modifying treatment. To learn more about Bietti’s crystalline dystrophy, click here.
Raising Awareness and Finding a Treatment
“Right now, our top priority is to raise awareness of BCD so it can be correctly diagnosed,” states Ismail Ceylan, who founded Invincible Vision. “I know first-hand how scary this diagnosis can be.”
In coordination with the campaign, the organization is expanding its available resources on its website, which can be found here.
Meanwhile, ReflectionBio®, a patient-led company, has been spearheading research into a possible gene therapy that could successfully treat the disease as well as studying the prevalence of the illness in different population groups. In preclinical evaluations, the gene therapy was able to successfully prevent the death of retinal cells.
“It brings hope to prevent thousands from going blind, a painful process my sister and I have personally experienced.” – Richard Yang, ReflectionBio Founder and CEO
People living with Bietti’s crystalline dystrophy now have more reason for hope than ever before.
