This is the third in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Nanci Ryder, a renowned Hollywood publicist and co-founder of BWR Public Relations, was diagnosed with ALS in 2014. Since then, she has worked tirelessly to raise public awareness about ALS, and to advance the search for effective treatments and cures for ALS, with the help of her many friends and supporters. Along with her family and friends, like Renée Zellweger and Courteney Cox, she has participated in the Los Angeles County Walk to Defeat ALS as “Team Nanci”, raising over $690,000 in support of the ALS community.
It is with heavy hearts that we share the news that Ryan Farnsworth, whose story is featured as a part of our #VoiceYourLove campaign, died yesterday evening surrounded by his family. Ryan was diagnosed with ALS in January 2015, at the age of 29. As active ambassadors of The ALS Association’s mission and vision, Ryan and his family selflessly moved us closer to our vision to create a world without ALS.
At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.
Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.
Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.
More than 1,200 participants, volunteers, and members of the community came together for a family-friendly day of celebration, exercise, education, awareness, music, food, and family fun at The ALS Association Golden West Chapter’s 14th annual Napa Valley Ride to Defeat ALS and Walk on Saturday, September 22.
An amazing group of people came together for Climb to Defeat ALS earlier this month. The first Team Challenge ALS team summited Mt. Elbert in Colorado on September 7 and has raised over $65,000 for The ALS Association, so far.
The ALS community recently presented its recommendations to the U.S. Food and Drug Administration (FDA) regarding the Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry at a day-long event, called ALS Community Workshop: Therapy Development and Regulatory Pathways, which was held in Washington, D.C., on July 12. Over 90 people attended in person, with many more tuning in online.
"When someone you love becomes a memory...that memory becomes a treasure,” said Christine Caron, a participant in the Western Massachusetts Walk to Defeat ALS.
ALS affects everyone in the family – even kids. In a new video, real families talk about the impact that a loved one having ALS has on young people - how the disease can be scary and confusing for them and how kids can inspire us all to keep fighting. Watch it and share with your friends and family.
August begins today, marking a month-long opportunity to raise awareness and support for the fight against ALS. Four summers ago, the ALS Ice Bucket Challenge soaked the world, but we continue to fight for a world without ALS. In that time, The ALS Association has committed more than $96 million to our mission, including more than $84 million to research.
When the Super 16 round of The Basketball Tournament tips off this weekend on ESPN, the ALS community will be represented by a team of hoopsters fighting for a chance to move on to the quarterfinals and secure the $2 million prize, all while fighting to create a world without ALS. Team Challenge ALS will donate $250,000 to the fight against ALS, if it wins the tournament.
A diagnosis of ALS takes its toll in many ways. The person living with ALS eventually loses the ability to move, eat, speak, and breathe. But the effects of this disease don’t end there. Witnessing a loved one’s experience and being a caregiver have profound effects on family members and children, too.
Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving SSDI benefits. Every patient must wait regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.
One aspect of care you may not have considered before is travel and transportation. ALS makes any kind of travel much more complicated, even local trips most of us take for granted, like going to the movies or visiting relatives.
The story of Steven’s Stompers begins with Steven Davis. Steven is a lifelong resident of Bladen County, N.C., an avid outdoorsman, a pipe fitter by trade, and an outstanding athlete. He began noticing symptoms in February 2012 and was diagnosed with ALS by a neurologist on April 30, 2012, at age 34.
Since our founding in 1985, we have put collaboration at the forefront of everything we do. The gift of the ALS Ice Bucket Challenge in August 2014 gave us the unique opportunity to up our game in establishing innovative research partnerships around the world.
Have you ever been frustrated by not being able to get your point across? People living with ALS often face this challenge. But thanks to our care services staff and partners, and assistive technology, people living with ALS can keep communicating, even after they’ve lost their voices.
The ALS Association teamed up with a group of expert data analysts at Mastercard who spent more than 24 consecutive hours to help our national office and chapters gather insights into improving operations and strategies to advance our mission to find a cure for ALS.