For people living with ALS, reduced physical mobility and the ability to communicate often cause “Smart” homes – in which household items become connected and are controllable with the use of technology – can greatly improve accessibility and be life-changing for people living with the disease.
ALSUntangled, an award-winning website dedicated to helping people with ALS figure out whether alternative and off-label treatments are effective and appropriate, has created a list of 10 red flags people with ALS should be aware of when considering off-label treatments they read about on the Internet.
We believe that systemic racism has a direct effect on the lives of many within the ALS community. We can and must do more to erase the disparities that exist for people with ALS of different races, ethnicities, and socio-economic circumstances.
The ALS Association joins the ALS community in mourning the loss of the legendary Hollywood publicist, Nanci Ryder. Nanci was diagnosed with ALS in 2014 and worked tirelessly through her journey spreading awareness of the disease and raising necessary funds for patient care and research.
Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. June 1 marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.
About 10 percent of all cases of ALS are due to genetic mutations and are inherited from a family member. If there are two or more family members with ALS, the disease is considered familial, and there is a 50% chance of passing that mutation on to each of his or her children. For siblings Jim Weber and Cathy Kettner, it’s the 50-50 proposition that brings them to the fight.
As states begin easing some of the stay-at-home orders put in place in response to the COVID-19 pandemic, people who are high-risk of exposure to the coronavirus are still urged to remain safely at home and to take continued precautions to distance themselves from anyone who may have been exposed to the virus.
Meet Connor Way. Connor is your typical 8-year-old boy: he loves to play outside with his friends, go to school, and spend time with his family, especially his grandfather he calls “Papa.” But there’s something different about Connor’s story, his “Papa” had ALS.
Carianne Meystrik has been living with ALS for 22 years – all while raising 4 children. In honor of Mother’s Day, we reached out to Carianne to check in on her ALS journey and her family, and to get her reflections on the impact ALS has had on motherhood.
Gary Trosper was a transportation executive before he was diagnosed with ALS in 2015. After two years, he was forced to retire due to his symptoms, but he knew he didn’t want to just sit around: he wanted to make a difference. Acting as an advocate and taking action for himself and others is very important to him.
Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.
Stay-at-home orders in response to the COVID-19 pandemic have upended many aspects of life, not least of which is volunteerism. And while the number of people volunteering has been declining in recent years, those who do volunteer are finding unique ways to stay engaged despite the coronavirus.
National Volunteer Week kicks off today. The weeklong celebration of volunteers began in 1974 and honors the people who come together and volunteer their time and resources to solve some of the world’s greatest problems.
Until he was diagnosed, Bob Palucki didn’t really know anything about ALS. “It really didn’t affect anybody in my family,” he says. “We’ve come so far in all the different medicines for all the different diseases and to think that we’ve got a disease as terrible as this and there’s no cure for it, there’s not even anything that can stop it from progressing.”
With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?
When the Biology Honors class kicked off a special course to learn more about neurological diseases, they turned it into a unified effort to educate their community and raise over $3,000 for ALS research. The ALS Association spoke to some of the folks behind the project.
On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.