What is our role in Collaboration for a Cure?

The ALS Therapy Development Institute and its scientists actively work to discover and develop effective treatments for ALS – this has been our singular mission since we were founded in 1999 and our urgent focus to accomplish it will never waver.

As a leader in ALS research with a long, well-established history of collaborating with academic researchers, other ALS and non-ALS nonprofit organizations, biotechnology and pharmaceutical companies, we feel it prudent to be part of the Collaboration for a Cure effort. Through this convening effort, we aim to share our vision and approach to ending ALS with other organizations. As the world’s first nonprofit biotech, we are also the largest independent research center 100% focused on solving the ALS crisis. As a member of Collaboration for a Cure, we bring 15 years of experience innovating new research models and disrupting the traditional medical research system to accelerate drug development for people with ALS today.

Our CEO/CSO, Dr. Steve Perrin, is a member of the Steering Committee of Collaboration for a Cure, along with the CEOs of ALSA and MDA, and an associate executive director of Team Gleason. As the only scientist on the Steering Committee, Dr. Perrin will help ensure that ALS research and drug development are priorities within Collaboration for a Cure and among the participating organizations. The Steering Committee was organized following the first meeting of Collaboration for a Cure in 2015, and has since met several more times in person or via conference call.

The Steering Committee made a unanimous decision regarding Collaboration for a Cure participation, asking all members of Collaboration for a Cure to sign a Declaration of Collaboration, which Dr. Perrin signed on behalf of the Institute. The Declaration encourages the signatories to “work together in the pursuit of improving and saving the lives of people with ALS by promoting the advancement of treatments and cures in the manner set forth herein.” The Collaboration for a Cure consists of 18 member organizations, and the next meeting will occur March 22, 2016 in Washington, DC.

“As we have said from the start of our involvement in Collaboration for a Cure, we need to have people with ALS and their families play a central role with our organizations to advance our efforts to improve and save the lives of those battling this disease. While talking about collaboration is a start, we need true partnership to deliver on what we all want to see happen; an end to ALS once and for all. I am pleased to be part of the steering committee and with our Institute's Board, Affiliates and Ambassadors behind me, I hope to bring a greater sense of urgency to what can be done now to advance the most exciting potential treatments for ALS,” said Steve Perrin, Ph.D., CEO & CSO of the ALS Therapy Development Institute / ALS.net.

The ALS Therapy Development Institute is unlike any other organization part of Collaboration for a Cure, bringing an experienced, patient-centered, and urgent voice to the table. As such, we have a responsibility to be a voice within Collaboration for a Cure to advocate for greater transparency and milestone-driven partnerships between organizations working on behalf of people with ALS today and toward the creation of treatments and cures. For example, we believe that people with ALS involved in medical research deserve greater recognition across our community and should have access to their data produced through their participation in studies. Finally, as the largest independent research organization focused on solving the ALS crisis, we believe that we must use our voice within Collaboration for a Cure to support our scientists in their active and urgent search for treatments and cures for ALS.

Since we were founded by and continue to be led by people with ALS and their families, we understand the urgent need for treatments now. Our signed Declaration of Collaboration was shared with and discussed among our Board of Directors, National ALS.net Ambassadors and Affiliates, the vast majority of whom are people with ALS and care providers to people with ALS.

Our participation in Collaboration for a Cure will be deliberate and we will be transparent with ALS.net Affiliates, National ALS.net Ambassadors and the ALS community at large about Collaboration for a Cure meetings, tasks, actions, etc. as they relate to our mission to discover and develop effective treatments for ALS.