Our Shine A Light on Usher Syndrome Exhibit at the ProQR Eye on the Future Forum.
February 28th, 2020 in Paris. EFF 2020 gave special focus to the patient perspective in the clinical development process. The EFF team put together an exciting program with Keynote Speaker, Rebecca Alexander. No one would blame Rebecca Alexander if she gave up on life. Born with a rare genetic disorder, Usher syndrome (type III), Rebecca has been simultaneously losing both her vision and hearing since she was a teenager. She was told that by age 30, she’d be completely blind. Then, at 19 she discovered she would lose her hearing as well. Despite these obstacles, Rebecca refused to lose her drive and zest for life and rose above and beyond every challenge she faced.