FOUNDER OF ALS ONE, KEVIN GOSNELL, PASSES AWAY AT 48

Posted on August 9th, 2016

FOUNDER OF ALS ONE, KEVIN GOSNELL,  PASSES AWAY AT 48

Gosnell Worked Tirelessly and Selflessly to Advocate for Treatment and Care for ALS, to help ensure in the Future that “No One Should Die This Way”  

BOSTON, August 8, 2016 –  With deep sadness, ALS ONE announces today that Kevin Gosnell, Founder of ALS ONE (www.ALSONE.org), has died after a courageous battle with amyotrophic lateral sclerosis (ALS), just 15 months after his diagnosis. ALS is a disease that currently has no cure or treatment. During his short battle with the disease Gosnell fought tirelessly to advance ALS research and care through the formation of ALS ONE. ALS ONE is a partnership of many of the world’s leading neurologists, researchers and care specialists committed to working together to expedite progress toward finding a cure or treatment for ALS by 2020, while simultaneously improving care for persons living with ALS and their families.

 

“Rarely has one individual done so much in such a short time for ALS research,” said Dr. Robert H. Brown Jr., MD, DPhil UMass Medical School and ALS ONE partner.  “His vision and commitment will be a continuing inspiration to us all as we press on to find a cure for ALS.”

 

Kevin was diagnosed with ALS in the spring of 2015 and immediately put his leadership skills to work, dedicating his remaining time to convening the best minds in the ALS community to accelerate treatment – a goal that many thought was not possible. Kevin was steadfast in his mission. A selfless man, Kevin knew his work would not impact his outcome yet he stayed tirelessly committed to saving future generations from receiving his same terminal fate.

 

Launched in January 2016, ALS ONE created an unprecedented partnership of the world’s leading experts from venerable institutions, including Dr. Robert H. Brown Jr., MD, DPhil UMass Medical School, Dr. Merit Cudkowicz, MD, MSc Massachusetts General Hospital (MGH), Dr. Steve Perrin, Ph.D. ALS Therapy Development Institute, Dr. Nazem Atassi, MD MGH, Dr. James Berry, MGH, Ron Hoffman, Founder and Director CCALS as well as The ALS Association and ALS Finding a Cure Foundation.  The ALS ONE partnership was created to leverage the expertise from each of the research institutions through the sharing of ideas and responsibilities to advance each of the strongest therapeutic opportunities identified. Through the sharing of information, this partnership eliminates unnecessary duplication and helps to expedite the path to finding an ALS treatment. As the science and research efforts take time and require significant funding, ALS ONE also works to improve care for persons living with ALS by creating more access to clinical trials through education and transportation, as well as providing technology, equipment and support services. Since its founding, ALS ONE has raised over $5.2 Million dollars through grants and fundraising and is on track to total $7 Million by year’s end.

 

“Over the last nine months, we have worked closely with Kevin to understand, embrace and implement his vision.  We have built a very strong team to assure that the mission of our organization is fulfilled,” said Matthew J. Hogan, Co-Chair of the Board of Directors. “ALS ONE is fully committed to accomplishing our goal of a cure or treatment by 2020, while providing improved care now.”

 

While recent breakthroughs have been widely reported, ALS continues to be an extremely underfunded disease in two areas: care and research. ALS patients need more access to clinics, technology and care services to mitigate the effects of this horrible disease. Researchers are on the cusp of significant breakthroughs, but the reality is that more funding is required to help find an effective treatment for the disease.

 

“We are heartbroken at the loss of our friend and visionary leader,” said Jennifer DiMartino, Executive Director of ALS ONE. “Our deepest sympathies are with the Gosnell family, while our resolve and dedication to fulfill the goals of the organization remain undeterred.”

 

To learn more about ALS ONE, our partners and to donate to further the mission of care and cure for ALS, please visit www.ALSONE.org.

 

About ALS ONE and ALS Knights

The ALS Knights is an ALS non-profit 501c3 based in Hanover, Massachusetts that was founded by Kevin Gosnell and his family with the goal of creating an army of people that are committed to fighting and fundraising for ALS until there is a cure. The ALS Knights are a fundraising engine for ALS ONE.  ALS ONE is a partnership of the top ALS experts from leading Massachusetts institutions, including ALS Therapy Development Institute, UMass Medical Center, Massachusetts General Hospital and Compassionate Care ALS.  These venerable institutions are combining forces with the goal of finding a treatment for ALS within the next four years, while simultaneously working to improve the care model for persons living with ALS and their families. ALS ONE is a d/b/a of the ALS Knights. For more information, visit www.ALSONE.org and/or www.ALSknights.org.