“Patient advocates are the driving force behind the development of many new drugs and amendments to medical regulations. It is the common man and woman who drive technology by demanding access to it. I know, because first and foremost, I am a patient advocate.
It is an absolute tragedy that Ms. Frase lost her son Joshua to X-linked myotubular myopathy. As a mother I cannot imagine anything more devastating. We all hope for a better tomorrow, but we need to realize that unless we act now, for many people, there will be no tomorrow. Each of us have a responsibility to accelerate medicine so that we can put an end to these horrible tragedies.”
Liz Parrish, CEO BioViva, comments on Determined Parents are Moving the Needle on Gene Therapy