The ALS Association
FOR IMMEDIATE RELEASE
ALS ONE is an unprecedented partnership of leading ALS experts who are combining forces to find a treatment for ALS and develop an improved care model
Washington, D.C., (January 21, 2016) — Today, Kevin Gosnell, person living with ALS and founder of T&K Asphalt Services, Inc., launched ALS ONE to bring together leading neurology experts and care specialists in Massachusetts in partnership to leverage their institutions’ strengths to expedite progress toward finding a treatment for amyotrophic lateral sclerosis (ALS) within in the next four years. Partners in the initiative include The ALS Association, ALS Finding a Cure Foundation, ALS Therapy Development Institute, Massachusetts General Hospital (MGH), UMass Medical School and Compassionate Care ALS (CCALS).
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.
When Gosnell, Founder of ALS ONE and T&K Asphalt Services, Inc., was diagnosed with ALS in spring 2015, he immediately put his business acumen and CEO leadership skills to work convening the best minds in the ALS community with the goal of partnership to expedite progress toward finding a cure and improving care. Today, his vision becomes a reality with the launch of ALS ONE. ALS ONE will simultaneously work to improve the care model for persons living with ALS and their families.
"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 Gosnell. "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 leverage my business and leadership skills 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."
The ALS Association (and the ALS Finding a Cure Foundation) are working together with ALS ONE to develop and potentially fund appropriate clinical and research initiatives to maximize synergies that will make a significant impact on the disease.
Lucie Bruin, Ph.D., M.B.A., Chief Scientist of The ALS Association and Stephen Winthrop, a member of The Association’s National Board of Trustees, both serve on ALS ONE’s Board of Directors.
According to Bruijn, “Collaborations are key to expediting treatments for people living with this disease and we are very pleased to see these groups coming together in Massachusetts, a key area of the country where tremendous ALS work is happening.”
The ALS ONE leadership team is comprised of many of the top ALS experts in the world, including: Robert Brown Jr., M.D., Ph.D., UMass Medical School; Merit Cudkowicz, M.D., MSc, MGH; Steve Perrin, Ph.D., ALS Therapy Development Institute; Nazem Atassi, M.D., MGH; James Berry, M.D., MGH; and Ron Hoffman, Founder and Director CCALS.
"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, Professor of Neurology, Harvard Medical School and Chief of Neurology Service, MGH." Through ALS ONE, working together with Bob Brown and his team at UMass Medical School 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 approach of ALS ONE is to leverage the expertise from each of the research institutions through sharing ideas and responsibilities to advance each of the strongest therapeutic opportunities identified forward. By sharing information, this partnership will help eliminate unnecessary duplication and expedite the path to find an ALS treatment. As the science and research efforts will take time and significant funding, ALS ONE is also working 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.
The ALS ONE partnership team is celebrating the launch by participating in a panel discussion on Thursday, Jan. 21 at the John F. Kennedy Presidential Library & Museum. The panel moderator is Lisa Genova, American neuroscientist and New York Times best-selling author of Still Alice, Inside the O'Briens, Left Neglected and Love Anthony. On this day, the United States Congress is flying the American flag in celebration of the launch of ALS ONE.
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 School, 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.
About ALS Therapy Development Institute
The ALS Therapy Development Institute (ALS.net) and its scientists actively discover and develop treatments for ALS. The Institute is the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by ALS patients and their families, the charity understands the urgent need to slow and stop this horrible disease. Based in Cambridge, MA, the Institute has served as one of the leaders in sharing data and information with academic and ALS research organizations, patients and their families. For more information, visit www.alstdi.org.
About Compassionate Care ALS (CCALS)
Compassionate Care ALS is a non-profit organization with a mission to support people diagnosed with ALS, their families and communities as they navigate the complexities, both physical and emotional, associated with the disease. Since 1998 CCALS has provided resources including equipment, educational workshops, Medicare/Medicaid assistance, guidance and awareness in living with ALS, caregiving, and end-of-life issues. For more information, visit http://www.ccals.org.
About Massachusetts General Hospital (MGH)
Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $760 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, reproductive biology, systems biology, transplantation biology and photomedicine. In July 2015, MGH returned into the number one spot on the 2015-16 U.S. News & World Report list of "America's Best Hospitals." For more information, visit www.massgeneral.org.
About UMass Medical School
The University of Massachusetts Medical School (UMMS), one of five campuses of the University system, comprises the School of Medicine, the Graduate School of Biomedical Sciences, the Graduate School of Nursing, a thriving research enterprise and an innovative public service initiative, Commonwealth Medicine. Its mission is to advance the health of the people of the commonwealth through pioneering education, research, public service and health care delivery with its clinical partner, UMass Memorial Health Care. In doing so, it has built a reputation as a world-class research institution and as a leader in primary care education. The Medical School attracts more than $240 million annually in research funding, placing it among the top 50 medical schools in the nation. In 2006, UMMS’s Craig C. Mello, PhD, Howard Hughes Medical Institute Investigator and the Blais University Chair in Molecular Medicine, was awarded the Nobel Prize in Physiology or Medicine, along with colleague Andrew Z. Fire, PhD, of Stanford University, for their discoveries related to RNA interference (RNAi). The 2013 opening of the Albert Sherman Center ushered in a new era of biomedical research and education on campus. Designed to maximize collaboration across fields, the Sherman Center is home to scientists pursuing novel research in emerging scientific fields with the goal of translating new discoveries into innovative therapies for human diseases. For more information, visit http://www.umassmed.edu.
About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at www.alsa.org.
About ALS Finding a Cure Foundation
The sole purpose of the ALS Finding a Cure℠ Foundation is funding research to find a cure. The foundation partnered with the ALS Association and GE Healthcare to accelerate therapy development by funding therapies ready for people today and breaking down barriers to success. Our goal is to translate funding into cutting-edge development tools, provide an open platform for neurological research material, understand disease heterogeneity, and promote early detection for those affected by ALS. For more information about the ALS Finding a Cure Foundation, visit our website at www.alsfindingacure.org.