Every month we feature a new portrait and story of all the remarkable people, families and researchers who are dedicated to bringing awareness and finding a cure for Usher syndrome.
Meet Jessica Chaikof
Every single day a person with Usher Syndrome faces numerous obstacles, such as getting to places, seeing at night, or hearing his or her friend in a noisy situation. These challenges are tiring and frustrating because they are never ending. As somebody, who has Usher Syndrome Type 1F, I face this long and winding ladder that presents itself with hurdles that attempt to prevent me from going up to the next level. With perseverance and determination, I can overcome these obstacles. There is no denying that they are exhausting to deal with at times and, on numerous occasions, I have wished that I could just stop and do nothing. As they always say, “The show must go on!” Therefore, life must go on because you cannot stop living, even though you are worn out from dealing with the challenges Usher Syndrome presents. For Full Story
Jessica and Jigg
Jessica's parents Melissa and Elliot Chaikof founded the nonprofit Usher 1F Collaborative in 2013 to address the lack of research specific to Usher 1F. The mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F. To date, they have raised over $1 million toward a cure, funded the creation of two animal models, and have an international team comprised of five research labs working together to find a cure, testing potential drug therapies and developing gene replacement therapies. While their research is specific to Usher 1F, their work to develop gene therapy for large Usher 1F gene also holds potential benefit for other inherited retinal diseases caused by large genes. for more information