Everything Under The Sun: Collaboration Fosters ALS Research

Sunday, March 20, 2016

Collaboration Fosters ALS Research

Female research scientists at ALSTDI: (l to r) Cindy Gill, Monica Wang, Beth Levine, and Val Tassinari.

There are some different types of illnesses that develop in human beings, that lead to increased debilitation as time goes by. With some of these illnesses, scientists don't yet know how or why they develop, much less how to cure them, or even restore a measure of functioning. One of these is AMYOTROPHIC LATERAL SCLEROSIS (ALS), which is a progressive neurodegenerative disorder.

The ALS THERAPY DEVELOPMENT INSTITUTE (ALSTDI), along with its scientists, have been working actively to develop treatments, or even cures, for ALS. This institute is also known for its collaborative efforts with other nonprofits and biotechnology and pharmaceutical companies. So, it was quite natural for them to join up with COLLABORATION FOR A CURE, a consortium of ALS-related organizations, which shares research information and national fundraising efforts.

The CEO/CSO of ALSTDI, Dr. Steve Perrin, is serving as a member of the steering committee of Collaboration For A Cure, the only scientist with a seat. His voice will assure that research and development remain top priorities of the Collaboration. Since their first meeting in 2015, the committee has had several in-person and conference call meetings.

The steering committee has produced a Declaration Of Collaboration, which is being signed by member organizations, including ALSTDI. The Declaration encourages members 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." On Tuesday, March 22, the Collaboration will hold a major meeting in Washington, DC.

Dr. Perrin stated, "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 hope to bring a greater sense of urgency to what can be done now to advance the most exciting potential treatments for ALS."

A group of Young Faces Of ALS ambassadors at an informal gathering.

The members of ALSTDI are hoping to foster greater transparency and milestone-driven partnerships with other organizations through its involvement in the Collaboration. One of the hoped-for effects would be to develop greater recognition of the scientists working on this valuable research and the data that is compiled. Research results that are given a louder voice and wider spread foster future fundraising efforts and allow more involvement of the public in a commitment to helping those with this debilitating illness.