Despite the many challenges caused by COVID-19 this past year, ALS research made strides toward finding effective treatments for ALS. As 2020 winds down, we wanted to share an update from our partners at Biogen on some of their ongoing research projects.
The ALS Disability Insurance Access Act went into law Tuesday, removing the 5-month delay for people with ALS to access the Social Security Disability benefits. This marks the culmination of a multi-year fight by ALS advocates across the country.
Back in 2000, when Veronique Belzil was working as a counselor in Canada, she found a new path after watching her husband’s uncle quickly succumb to ALS.
The Food and Drug Administration on Friday approved emergency authorization of a COVID-19 vaccine developed by Moderna, the second vaccine approved by the agency to combat the coronavirus pandemic.
We recently spoke with George Stevens – husband, father, grandfather, and a person living with ALS. George and his family live in Maine and have been very involved with The ALS Association Northern New England Chapter. Here is what George had to say about his journey with ALS in his own words.
Our family’s journey with ALS was no doubt the saddest and hardest thing we ever encountered. But we managed to stay strong through it, and the entire experience brought us all even closer together. In the end, it became the most special and magical journey our family ever had together.
We recently spoke with Hugh O’Brien – husband, father, grandfather, and a person living with ALS. Hugh and his family live in Pennsylvania and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Hugh had to say about his journey with ALS in his own words.
The ALS community earned a hard-fought victory this week with passage of the ALS Disability Insurance Access Act, ending the five-month waiting period for people with to start receiving their Social Security Disability Insurance (SSDI) benefits.
We recently spoke with Kathleen Poirier - wife, mother, and a person living with ALS. Kathleen and her family live in Florida and have been very involved with The ALS Association Florida Chapter. Here is what Kathleen had to say about her family’s journey with ALS in her own words.
The U.S. Senate on Wednesday passed the ALS Disability Insurance Access Act – a huge success that would not have been possible without the tireless advocacy of ALS advocates across the country. Thank you for every action you took to make this vote a reality!
For the most part, high school senior Kellie-Anne Poirier was like any other kid growing up - going to school, enjoying time with her friends, and traveling around the world with her family. That was all true until ALS came crashing into her life.
Gail and Paul Dotson wanted to donate to their friend Dave’s Walk to Defeat ALS® team, Pam’s Pals. The Dotson’s grew pumpkins all summer and engaged their grandchildren in the harvest, sale, and donation process.
We are deeply sorry to share that Pat Quinn passed away today. Pat was co-founder of the ALS Ice Bucket Challenge and an inspiration to millions of people around the world.
Like many family caregivers, Linda juggles caregiving and her career. According to the National Alliance for Caregiving, 61 percent of family caregivers continue to work.
Often ALS takes away a person’s ability to swallow safely, and if so maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers. And finding delicious family friendly recipes for all to enjoy during the holidays can be difficult.
You may know the old saying “ship shape.” In many ways, that old reference to order and fitness defined Yvette Wilson’s life. She joined the United States Navy immediately after high school and the discipline that experience gave her has shaped her life in many ways. Even after she left the Navy, she lived an orderly life, blessed with good health and a loving family in Albuquerque, New Mexico.
All signs pointed to a wonderful future, until one day she started experiencing a heaviness in her feet.
The ALS Association and I AM ALS on Friday submitted a petition to the Food and Drug Administration calling on the agency and Amylyx Pharmaceuticals to act swiftly and with urgency to make AMX0035 available as soon as possible. The petition was signed by more than 50,000 people from across the country who have been affected by ALS.
We recently spoke with Amber Letters - daughter, wife, mother, and part time caregiver of a person living with ALS. Amber and her family live in Pittsburgh and have been very involved with The ALS Association Western Pennsylvania Chapter. Here is what Amber had to say about her family’s journey with ALS in her own words.