BENEFITING: COALITION FOR USHER SYNDROME RESEARCH
EVENT DATE: Oct 13, 2013
Anne Croy wrote -
Mark and I will be running the 2013 Chicago Marathon on October 13th for The Coalition for Usher Syndrome Research (http://www.usher-syndrome.org). We have a 26 year old daughter with Usher Sndrome Type 2.
The Coalition for Usher Syndrome Research is dedicated to helping families cope with Usher Syndrome while working diligently to find a cure. The Coalition counts a number of leading institutions and researchers among it’s members. They are truly international in scope with member institutions from across the globe including some of the finest international organizations.
Usher syndrome is a rare inherited condition characterized by hearing impairment and progressive vision loss. The vision loss is due to retinitis pigmentosa (RP), a degenerative condition of the retina, and usually appears during adolescence or early adulthood. Symptoms vary from person to person and progress at different rates.
Researchers estimate that as many as 50,000 people in the U.S. have Usher syndrome. Worldwide, it is the leading cause of combined deafness and blindness. While there are no treatments for Usher syndrome, intensive research is underway to discover the causes of, and treatments for, all types of the disease.
The Foundation Fighting Blindness (FFB) is aggressively studying causes and potential treatments for Usher syndrome and other retinal degenerative diseases. Excellent progress has been made recently in the areas of gene therapy, retinal implants, stem cell therapy and drug-based therapy.
We will divide our funds between The Coalition for Usher Syndrome Research and The Foundation Fighting Blindness.
Thank you so very much for your support!