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.
I am the legacy of Oscar Aukschun, who was a wood pattern maker and first generation American and a resident of Cleveland, Ohio who developed weakness of his hands and arms in 1943 around the age of 43 years. He was a hard-working father who provided for his wife and three children.
November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.
Voting safely during a pandemic is challenging enough, but what do you do if you're high risk for contracting the coronavirus and facing mobility and motor function challenges? While the 2020 election is now just days away, it’s more important than ever to understand your rights, the voting options available in your state, and make your plan to share your voice.
The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to the specialized care they need, based on best practices. Disrupted by the pandemic this year and the ability to see patients in person due to quarantines and safety issues, providing care in a clinic setting took on the challenges of major change, but ALS doesn’t stop and neither do we.
