TEAM GLEASON ALS SUMMIT 2013
Release – July 23, 2013
Team Gleason Summit Sets Pathway for New Treatments and a Cure for ALS.
Steve Gleason, former NFL player and New Orleans cult hero who was diagnosed with ALS in 2011, held the first Team Gleason Summit for a Cure on June 27-28 with a historic announcement that some of the world’s leading scientists agreed on an action plan to cure ALS.
For two days, scientists, clinicians, people living with ALS, their caretakers, advocates and associations came together to try and establish a roadmap for fast-tracking new treatments and a cure for ALS. Webcast live to over 2000 people in 15 countries, the Summit produced innovative results.
Attendees included representatives from Harvard University, Johns Hopkins University, Cedar Sinai Hospital, St Jude Children’s Research Hospital, Emory University, Massachusetts General Hospital and more than 50 other leading organizations.
Three key areas were identified by the participants as being critical to rewriting the future of the disease in the short term.
- Establishing a national program to create biomarkers for ALS
- Collecting and deep-mining data in new ways to identify possible new avenues for treatment development
- Reducing the cost and time for clinical trials that provide treatments from “bench to bedside”
These three areas fit into a larger list of 10 priorities that will be further developed over the coming weeks into a collaborative action plan for a cure.
Jeffrey Rothstein, MD, PhD, co-chair of the Summit said: “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”. Co-chair Lucie Brujin, Ph.D. MBA, Chief Scientist, The ALSA “ This was a truly unique opportunity with vibrant dialogue between people living with the disease, caregivers, scientists and clinicians . The discussions pave the way to work more collaboratively moving forward in exciting areas that have been identified as key priorities”.
Steve Gleason, founder of Team Gleason, added: “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”.
In addition, participants from all sides called on government to make it easier for patients suffering from ALS to have a greater voice in how they are involved in clinical trials.
“The FDA has very strict rules on how drug protocols are used”, said Clare Durrett of Team Gleason. “But this means that ALS patients who may not qualify for a trial are being refused drugs that could make a real difference to them on the pretext that they may cause cancer. If you have a terminal disease, you are not really worried about getting another one”.
During the Summit, participants were invited to take part in the Dear World project, and share a call to action about the disease by writing a message on their body and having it photographed. You can find the video of this unique and powerful testimonial here.
Special Thanks to:
Mary Matalin & James Carville
Chef Donald Link
Dr. Nicolas Bazan
Little Gem Saloon
Hyatt New Orleans
Robert X. Fogarty