When Matt Wilsey’s daughter, Grace, was diagnosed with the ultra rare disease NGLY1 deficiency, he traveled the world to get a diverse group of researchers to work on finding answers. His approach to driving research, he says, comes from his experience as a Silicon Valley entrepreneur. We spoke to Wilsey about his experience getting a diagnosis for his daughter, what he learned from others who had gone before him, and the importance of open collaboration across institutions.
Learn more about NGLY1, here.
We are excited to announce that Matt Wilsey will be one of our speakers during our 2015 RARE Patient Advocacy Summit. His session focus is “what is the next step after a diagnosis?” In that session, he’ll guide you on what steps to take to educate yourself and your loved ones on moving forward after a diagnosis. Don’t miss out- register for the Summit, here.
RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.