Monday, October 7, 2013

Dear World ALS Summit

This past June saw the creation of the first ever ALS Summit right here in New Orleans.  Never before has such a gathering of minds taken place.  Scientists, clinicians, pALS, their caretakers, friends, and family from all over the world traveled to New Orleans with with one goal in mind: to establish a road map to ending ALS.  Representatives from Harvard, John Hopkins, St. Jude's,  Emory, Cedar Sinai, and Massachusetts General all came together with the common goal of better understanding what ALS is and how to stop it.  You may not recognize them, but these are the rock stars of the medical world.

ALS is still such an unknown and underfunded disease, and it has become Steve's mission to end that. "Most people who are diagnosed with ALS are expected to just fade away and die. It is a horrific disease and yet it is underfunded and largely ignored. That is not OK. We set out to galvanize the world of ALS to speak in one voice and put their heads together to find a cure. I have been humbled by how many people are engaging with this vision. Today, this Summit has brought us one step closer to that vision becoming reality."

I'll leave it up to Jeffrey Rothstein, MD, PhD, and co-chair of the Summit to sum it up best, "Achieving breakthrough can only be done through collaboration. This Summit was the first time people living with the disease have been able to sit at the same table with some of the world’s leading scientists, and the results are extremely encouraging.”

I've shared with you the great work of Dear World before- it is an awesome project and I'm lucky to consider it's founder, Robert Fogarty, a good friend.  Unfortunately (for him) he was out of town during the Summit, so I was asked to fill in and capture the messages from some of the world's leading scientist and doctors.  It was an incredible honor.  The enthusiasm in the room was was impossible not to leave inspired.  I have no doubt in my mind that this and future Summits will have a drastic affect on ALS research.

It was such a great thing to be a part of and it absolutely would have never happened without Steve and the truly awesome people of Team Gleason.  I know I say this too much, but they are an inspiration to me...all of them.  

Here are the pics from that night back in June.  The messages are great.  Be inspired!  

Here is a video slideshow of the pics set to music.  Enjoy.

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