When a fatal disease like ALS comes into your life you have two choices. You can accept the diagnosis and wait to die or you can use everything you've got to fight. Fight for yourself and fight for others. My husband and partner Randy Pipkin chose the latter. After battling the disease for nine years, he died in 2014 at the age of 41.
When Kevin Gosnell was diagnosed with ALS in spring 2015, he also chose to fight. A successful businessman and father of three boys, Kevin immediately put his business acumen and CEO leadership skills to work to come up with an idea - ALS ONE. It is a simple idea with one goal - to convene the best minds in the ALS community to work together to expedite progress toward finding a cure and improving care. This week ALS ONE formally launches in Boston with the goal of finding a treatment within four years.
Kevin Gosnell and his wife and caregiver Kathy
"My nana Gosnell always said, 'many hands make light work' and as a small business CEO, I've lived by these words and always believed in the power of a team," said Kevin. "When I was diagnosed with ALS last spring, I was disheartened by the lack of collaboration in the field of ALS and decided to dedicate my remaining time to help build a team of the top ALS experts here in Massachusetts, the medical hub of the world, to expedite progress toward finding a treatment."
An unprecedented partnership of leading neurology experts and care specialists, ALS ONE is made up of the ALS Therapy Development Institute, Massachusetts General Hospital (MGH), UMass Medical Center and Compassionate Care ALS (CCALS). Through ALS ONE, these institutions are leveraging the strengths of their venerable institutions to expedite progress toward finding a treatment within the next four years. ALS ONE will simultaneously work to improve the care model for persons living with ALS and their families.
"ALS is an extremely underfunded disease in two areas: care and research. ALS patients need more access to clinics, technology and care services to ensure they can live their best life. We are on the cusp of research breakthroughs, and infusion money will help us find an effective treatment" said Dr. Merit Cudkowicz, MD, MSc, Professor of Neurology, Harvard Medical School and Director, MGH Chief of Neurology. "Through ALS ONE, working together with Bob Brown and his team at UMass Medical Center alongside Steve Perrin and his team at ALS Therapy Development Institute and Ron Hoffman of CCALS, we are confident that we will accelerate progress to find a treatment and improve care for the ALS community."
The ALS community has been historically fragmented, so the goal of ALS ONE is to leverage the expertise from each of the research institutions through the sharing of ideas and responsibilities to advance the strongest therapeutic opportunities. This ideally will help eliminate unnecessary duplication and expedite the path to find an ALS treatment. At the same time, ALS ONE is also working to improve care for people with ALS by creating more access to clinical trials through education and transportation as well as providing technology, equipment and support services.
Through ALS ONE, Kevin Gosnell proves that one man can make a difference. His work just might be the tipping point to help eventually lead to a real treatment for ALS. In the future, ALS ONE will hopefully be known as "ALS DONE." I, for one, hope to see that day. For more information on ALS ONE, visit www.ALSONE.org.