Jamie Heywood: The big idea my brother inspired

January 4, 2011 by Gail
Filed under VidStyle

When Jamie Heywood’s brother was diagnosed with ALS, he devoted his life to fighting the disease as well. The Heywood brothers built an ingenious website where people share and track data on their illnesses and they discovered that the collective data had enormous power to comfort, explain and predict.

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ABOUT Jamie Heywood

“After finding out that his brother, Stephen, had the terminal illness ALS, Jamie Haywood founded the ALS Therapy Development Institute in 1999. ALS TDI is the world’s first non-profit biotechnology company and accelerated research on the disease by hiring scientists to develop treatments outside of academia and for-profit corporations.

They were the first to publish research on the safety of using stem cells in ALS patients. In 2005, Jamie and his youngest brother Ben, along with close friend Jeff Cole, built PatientsLikeMe.com to give patients control and access to their healthcare information and compare it to others like them. It’s bold (and somewhat controversial) approach involves aggregating users health info in order to test the effects of particular treatments, bypassing clinical trials.

It was named one of “15 companies that will change the world” by CNN Money. Although his brother passed away in the fall of 2006, Jamie continues to serve as chairman of PatientsLikeMe and on the board of directors of ALS TDI.

Jamie has raised over $50 million dollars for ALS TDI and was the subject of the biography ‘His Brother’s Keeper’, written by Jonathan Weiner. He was also featured in the documentary ‘So Much So Fast’, exploring the development of ALS TDI and the personal story of he and Stephen.”

Here in PLO.com we see a steady and consistent march by readers to the Patients Like Me website. We believe it’s because collective data DOES have enormous power to comfort them, to explain and identify for them aspects of their conditions and to allow them to know (in as much as that’s possible) what’s up ahead. For Jamie and the team who perpetuate ‘the big idea that his brother inspired’, thank you all so very very much.

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