A collection of personal stories, articles, and news from the PRRF community.
A rare disease is defined as any disease that affects a small percentage of the population, often fewer than 200,000 people in the United States. Oftentimes, due to the rarity of these diseases and lack of a large patient population, gaining support and resources for treatment options is a challenge. Receiving a diagnosis of one of these rare diseases can leave an individual or family with a very isolated and lonely feeling
Read MoreBrandon has never let his visual impairment keep him from “moving up the fish ladder of life”. He never stays at one level very long. He is proud of his accomplishments but most importantly, he is always looking for young fish behind him to get to the next level, whether it is by direct personal assistance or advising on the development of a phone applications, to help them be successful in a sighted world.
Read MoreRebecca is a wonderful example of how a caring group can make an impact. The financial donations and the awareness which were raised are very meaningful contributions to the work of the Pediatric Retinal Foundation.
Read MoreAria’s journey began in October 2014, at just two months old. Her parents noticed she was often having rapid eye movements and urged their pediatrician to send the family to a pediatric ophthalmologist. The ophthalmologist contacted Associated Retinal Consultants immediately upon their first visit, and Aria was seen the very next day. A week later, after her first exam under anesthesia, Aria was given the diagnosis of familial exudative vitreoretinopathy (FEVR).
Read MorePresley has been learning how to walk with a cane and will soon begin learning Braille. She amazes us every day with how easily she picks things up and adapts. While we would give anything for Presley to be able to see, she has given us a new perspective on life and changed our world for the better. We are so thankful for Dr. Capone and the work that PRRF is doing to help families like us.
Read MoreMy husband Rob and I were absolutely thrilled to welcome our third baby girl Rachael into our family. When she was 5 weeks old, we noticed she didn't respond like her older sisters, Sophie, 5 and Isla, 3, when they were the same age. At 12 weeks old we took her to an ophthalmologist where we were told she was legally blind. Our world came crashing down. She was diagnosed with Familial Exudative Vitreoretinopathy (FEVR).
Read MoreBoth of our daughters have been diagnosed with FEVR. Therefore, you can understand why this foundation is dear to our hearts. We appreciated all of your hard work and are hopeful for a cure in the future.
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