My Brother: Stephen, 1969-2006
Things need to change
Our medical system could be better in so many ways and over the last decade my passion has been to find ways to both improve the way treatments are developed for disease and the way patients receive medical care.
PatientsLikeMe is changing the rules in medical care by giving patients in depth information on outcomes, treatments and symptoms that they can use to make more effective decisions on managing life changing illness. What we measure we improve. I hope that PatientsLikeMe gives patients the power to measure their disease outcomes and everyone the ability to improve them.
To accelerate the development of new treatments I founded ALS TDI in 1999 after Stephen was diagnosed. ALS TDI is the world's first non-profit biotechnology company and has become widely recognized as one of the most promising and innovative research organizations. ALS TDI implemented an industrialized therapeutic validation process and built a world class discovery program. We were the first organization to run an open research program, posting in real time the results of our studies for patients, doctors, and the research community. Over 100 families have joined with Stephen and my family to fund ALS TDI. Overall during my time as CEO we raised 50 million dollars including the historic discovery partnership in 2007 with Augie's Quest and the Muscular Dystrophy Association. As active board member I believe ALS TDI is the best non profit investment any patient or family that wants to accelerate effective treatments for ALS can make.
Thank you for joining my brother and my family in sharing your own experiences on PatientsLikeMe. You are working to help others and create an environment that improves care and accelerates the development of new treatments.
Stephen and my families journey wwith ALS has been profiled in the New Yorker, 60 Minutes, Pulitzer Prize winner Jonathan Wiener's book, His Brothers Keeper, and in the Sundance award winning documentary So Much So Fast.