TUCSON, AZ and CAMBRIDGE, MA; Jan 30, 2014, noon ET – The Muscular Dystrophy Association (MDA) and Augie Nieto, co-chairman of MDA’s ALS division together with his wife Lynne, today announced they are transitioning management of the successful “Augie’s Quest” campaign from MDA to the ALS Therapy Development Institute (ALS TDI). The transition will be occurring in the first quarter of 2014 as the organizations continue to support Augie’s Quest initiatives. MDA and ALS TDI will continue to support all currently scheduled Augie’s Quest events.
Since 2005, Augie’s Quest has raised nearly $40 million. From these donations, MDA has funded research and drug development ventures at ALS TDI, which have enabled the Institute to lead the world in preclinical drug screening of potential treatments for ALS, advance a promising treatment into clinical trials, develop new animal and induced pluripotent stem cell models to advance others, and partner with several global biotechnology and pharmaceutical companies on other important ALS treatment development programs.
“Augie has done remarkable work to raise both awareness and funds to support ALS,” said R. Rodney Howell, MD, chairman of MDA’s board of directors. “Because the funds are directed to ALS TDI through MDA’s translational research grants program, it makes sense that the management of these operations be led by ALS TDI. We are grateful for the past partnership and look forward to building on our shared progress for the larger ALS community.”
“I have been working with the MDA since I was diagnosed with ALS. It is a stellar organization. The momentum we have built with Augie’s Quest at ALS TDI requires a renewed and focused effort on increasing the amount of funds going to research and drug development. I call upon all my fellow PALS and the global ALS community to join me in accomplishing the task before us” said Nieto, who also serves as chairman of ALS TDI.
MDA has 44 ALS clinics directly assisting people fighting the disease and serves more ALS patients than any other U.S. nonprofit group, providing expert disease management, support groups and education, care coordination, and patient assistance. After the transition, it will remain the largest non-profit funder of ALS research in America with about 50 different projects underway worldwide representing $15-million of MDA commitments.
MDA’s involvement with ALS began in the early 1950s when Eleanor Gehrig, widow of beloved Yankees first baseman Lou Gehrig, was searching for a way to fight the disease that had taken her husband’s life. Mrs. Gehrig served more than a decade as MDA National Campaign Chairman. Since then, MDA has invested more than $324 million to ALS research and health care services.
This decision will more closely align Augie’s Quest fundraising efforts with ALS TDI. The world’s first nonprofit biotech, ALS TDI is also the world’s largest independent ALS-focused drug development organization. The Institute’s internal R&D team of 30 industry-trained scientists collaborates with leaders from both biopharma and academia to discover and develop treatments for ALS. ALS TDI has also emerged as the largest venture philanthropy investor with a focus on ALS.
The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases. It does so by funding worldwide research; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement. Visit mda.org and follow at facebook.com/MDAnational and @MDAnews.
About ALS Therapy Development Institute (ALS TDI)
The mission of the ALS Therapy Development Institute (ALS TDI) is to discover and develop effective treatments to end ALS as soon as possible. ALS TDI is the world’s largest independent ALS/MND drug development-focused nonprofit organization. It currently has partnerships with dozens of pharmaceutical and biotechnology companies worldwide in order to advance potential treatments into the clinic. Its lead ALS therapeutic candidate, Novartis’ (Switzerland) Gilenya (TDI-132), is in Phase 2A clinical trial for ALS. The 501c3 nonprofit biotech is funded and led by people living with ALS and their families. For more information, visit www.als.net.
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