Andrew Rea, a New York-based chef, filmmaker, and host of the hugely popular YouTube cooking show “Binging with Babish,” was hit hard when his friend, Garmt van Soest, messaged him to say goodbye during his final days. On October 23, Garmt passed away from complications from ALS.
On December 13-14, 2017, 52 people gathered in Charlotte, N.C., to discuss how to increase awareness and participation in the National ALS Registry, the only population-based registry in the country collecting information to help scientists learn more about who gets ALS and its causes. Researchers use the Registry in their studies to find possible treatments and a cure.
In January 2014, Terry Fiset, a retired attorney turned theater director, was having trouble speaking and wanted help. She met Andrea Caban, a voice, speech, and accent specialist and the head of Voice and Speech in the Department of Theatre Arts at California State University, Long Beach (CSULB).
We always enjoy our time at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association. This year was no exception. We listened, learned, networked, got inspired, caught up with old friends and colleagues, and so much more.
For families affected by ALS, the holiday season can bring painful reminders of what the disease has taken away. But, the season conjures as many (or more!) reminders of the love shared among family members.
Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.
Youth who help care for their loved ones with ALS are learning about important areas of ALS care – from physical therapy, occupational therapy, and speech therapy, to social work and neurology -- through YCare, an education and support program developed and directed by Dr. Melinda S. Kavanaugh, Assistant Professor of Social Work with the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee.
ALS is a severely debilitating disease that takes away a person’s ability to move, speak, swallow, and eventually breath. There is much to be accomplished to immediately enhance their quality of life. With this in mind, we sponsored an ALS Hackathon in partnership with Prize4Life to bring together bright, young students to brainstorm and quickly develop an assistive technology prototype.
People with ALS come first in everything we do. The ALS Association is dedicated to providing those fighting ALS, their families, and friends with the critical information, support, and resources necessary to live a full life and better meet daily challenges.
When first diagnosed with ALS, one of the first questions people ask is whether it is OK to continue exercising. A recently completed ALS Association funded study by Dr. Nicholas Maragakis of Johns Hopkins University and team set out to help answer this common question by exploring the possible benefits of exercise for people living with ALS.
By now, you’ve probably heard of #GivingTuesday – the global day of giving back! And while it’s a great day to raise money for ALS, #GivingTuesday is trending on all social networks, making it the best time to share your ALS story.
Are you ready for some Cyber Monday deals?! Turn those deals into support for people living with ALS and their families by shopping through AmazonSmile.
We bring the ALS community together to speak with one voice to increase awareness, advocate for research funding, and educate legislators – impacting thousands of people with ALS and their families. This advances our mission to discover treatments and a cure, and to serve, advocate for, and empower people living with ALS to live their lives to the fullest.
Doug Clough is a fearless ALS advocate from Gilbert, Ariz., who has made it his mission to make a huge impact on people living with ALS. Despite his ALS diagnosis in April 2014, he keeps going. He is involved in ALS advocacy in every way possible, from participating in The ALS Association National Advocacy Day to serving on the National ALS Registry task force to becoming a Northeast ALS Consortium (NEALS) Research Ambassador to participating in an ALS clinical trial, and this year being awarded the Iron Horse Award.
Diagnosed with ALS in February 2011 with bulbar ALS, Mickey Johnston is a U.S. Air Force Veteran. He lives in Atlanta, Ga. with his wife and caregiver, Debbie. They have been married for 37 years. We are thrilled to share Mickey’s story of how he started the “Shy-Dye Love Ministry” that brightens the lives of people living with ALS all over the world.
Mike Deeley, a United States Navy veteran from Columbia, Pa., proudly served from 1988 to 1992 as an Aviation Electrician Third Class. In December 2016, he was diagnosed with ALS. Today, Mike generously shares his story about how he is determined to make a difference despite his diagnosis.
Larry Tyler from O’Fallon, Missouri, was a loving husband, father, grandfather, devoted friend, coach, and a successful businessman who traveled the world. Larry was diagnosed with ALS in 2014 and passed away just over 18 months later. Despite all the hurdles he faced, Larry managed to keep his sense of humor and faith, while this devastating disease ravaged his body, slowly paralyzing him and eventually robbing him of his life.
When Thelma “TAG” Martinez was diagnosed with ALS in 2013, she was 65 years old. Her caregiver and husband of 46 years, Henry, quickly became involved in the services provided by their local chapter.
The ALS Association wishes you and your family a very safe and spooky Halloween!
This festive season is another reminder that ALS takes away the ability to do so many things that most of us may take for granted. With this devastating disease, even fun activities like bobbing for apples or going trick-or-treating with kids are made extremely challenging or simply not possible