ALS Association Commemorates 25th Anniversary

“I would herald the merger as the start of the end of ALS,” wrote Lawrence Barnett, Chairman Emeritus of The Association’s National Board of Trustees, in the first issue of the new organization’s newsletter.

What began as a grassroots organization quickly evolved into one of the leading ALS organizations in the United States by fighting ALS on every front.

It was the vision and sheer determination of Barnett that helped make The Association a reality.

Lawrence Barnett, Chairman Emeritus of The Association’s National Board of Trustees

“Lou Gehrig played in the house that Babe Ruth built,” said Allen L. Finkelstein, the former chair of The Association’s National Board of Trustees. “We fight ALS in the house that Larry built.”

“The ALS Association is a catalyst of vastly improved care provided to people with ALS, a pioneer of global state-of-the-art research that has resulted in important breakthroughs, and the orchestrator of legislative triumphs that have lessened financial hardships experienced by those with the disease and their families,” said Jane H. Gilbert, president and CEO of The Association.

“We are determined that another 25 years will not pass before we find a cure for this disease,” Gilbert continued. “The ALS Association specializes in providing hope, inspiration, innovation and making a difference. We want to be known, however, as the organization that led the way to a cure.” 

The ALS Association helped raise awareness of ALS to a level not seen since the world learned that New York Yankees first baseman Lou Gehrig had the disease.  

“It was New York Yankees first baseman Lou Gehrig who put ALS in the national spotlight when he was diagnosed with the disease in 1939, and it was The ALS Association that brought the spotlight back more than four decades later,” said Jay A. Daugherty, chair of The Association’s National Board of Trustees.

After its formation, the organization hit the ground running, locating its national headquarters in Southern California and assembling a team of passionate individuals who made the commitment to create a world without ALS.

“While a cure is our top priority, we also are aggressively seeking to find effective treatments that enhance the quality of life of people living with the disease and extend their life,” Gilbert said.  

Today, The Association’s mission statement stands as a testament to the bold vision of its founders: “To lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.”

“The founders of The ALS Association had hoped, by now, the disease would be conquered and The ALS Association’s work would be completed,” Daugherty said. “There are encouraging signs that new, highly-effective treatments and a cure are on the horizon.” 

The Association leads the way with groundbreaking research and has committed more than $55 million over the last decade toward finding a cause and a cure.

“This anniversary year marks a particularly exciting and promising time for research,” said Lucie Bruijn, Ph.D., chief scientist for The Association. “With the finding of two new genes linked to familial ALS, new treatment approaches entering clinical trials for the first gene to be identified for ALS and with an ever increasing global team of scientists, meaningful treatments are on the horizon for ALS.”

“Translational Research Advancing Therapies for ALS (TREAT ALS), The ALS Association’s biomedical research program enables scientists world-wide to bring important findings from the laboratory to patients,” Bruijn continued. “Over the years, The ALS Association’s research efforts have enabled investigators with a range of expertise to collaborate and better understand the disease.”

“The ALS Association, through meetings and global partnerships, has been a catalyst for innovation and has provided the support for the research community to exploit new and emerging technologies advancing progress at a more rapid pace,” Bruijn added.

In recent years, unprecedented victories have been won in Congress, the states and government agencies, brought about by advocates from every state coordinated by The Association’s Washington, D.C., advocacy staff and supported by Association Chapters. 

The Association's first candlelight vigil, now held annually at the Advocacy Day and Public Policy Conference

“Through advocacy, we are creating the roadmap that will lead to a treatment and cure,” said Steve Gibson, vice president of government relations and public affairs for The Association. ”Whether it’s enacting legislation to eliminate the 24 month Medicare waiting period and helping to secure benefits for our nation’s military veterans with ALS, or establishing a national ALS registry and generating nearly $500 million in government funding for ALS research, our advocacy efforts truly are making a difference in the lives of everyone who has been touched by this disease.”

The Association has built a reputation of excellence by responding to the needs of people with ALS and their families with comprehensive services and programs. The Association provides vital support, education and patient care through more than 100 affiliates nationwide which include The Association’s Chapters, Certified Centers of Excellence^SM and clinics.

“We work to make a difference in people’s lives through the care and management provided by ALS clinical experts in the centers integrated with the community outreach through The ALS Association Chapters,” said Sharon Matland, vice president of patient services for The Association. “We want people with ALS and their families to know that they don’t have to make this journey alone and that we work everyday to provide the care and support that is needed.”

Over the years, some of the most recognized faces in America have joined the fight against Lou Gehrig’s Disease by appearing in national public service announcements. Such notables as Jack Lemmon, Ted Danson, Helena Bonham Carter, Curt Schilling, Kate Linder and, most recently, Angela Lansbury, have given of their time and celebrity to raise awareness about ALS.

Angela Lansbury appears on the Today Show with the Association's Chief Scientist Lucie Bruijn

“These public service announcements served as a reminder to families with ALS that they are not alone, and those who did not know about ALS, could not help but care,” Daugherty said.

Lansbury joined the “Cure ALS Campaign” for The Association to honor her sister Isolde who passed away from Lou Gehrig’s Disease in the late 1980s. The campaign raises funds for The Association’s research program.

“Together, we enter the next quarter century impassioned by the dream that one day soon we will be able to look into the eyes of a person with ALS and say, ‘There is a cure,’” Lansbury said.