My son Robert Russell was diagnosed with choroideremia (CHM) days before he began his freshman year of college. As a child he ran into things at night, but during the day he lived an active life and appeared to have normal vision.
In his early thirties he had to stop driving a car after a few minor scrapes in which no other drivers were involved. Around that time Cory McDonald and a few others created the Choroideremia Research Foundation to support CHM patients and their families. We have been early monthly donors to the Foundation, and continue to do so now.
In 2015 Robert was selected for a CHM clinical trial at the University of Pennsylvania under the direction of renowned genetic researcher and physician, Dr. Jean Bennett, a close ally of the Choroideremia Research Foundation. Robert received an injection of billions of healthy genes into his right eye, the worst of the two.
Now seven years later, in his early fifties, Robert's operative eye is now his dominant eye and he retains a good amount of color vision! After years of using a white cane, he seldom uses it anymore. He adeptly handles air travel, train travel, and various modes of local transportation. His central vision is retained and he lives independently, enjoying reading, music, and life in general.
I urge all who are affected in some fashion by choroideremia, whether patients or family members, to support the Choroideremia Research Foundation financially. By this means, one day research will advance to a point where not only more treatments will become available for CHM patients, but a cure will be found!
I give the Choroideremia Research Foundation my highest recommendation. read more