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.
We’ve been telling you how excited we are about PopSockets joining the fight against ALS this summer. The company is donating 10 percent of net proceeds for every PopSockets grip purchased on their website through September 30.
When Dr. Timothy Miller and his colleagues from Washington University in St. Louis published preclinical data in The Journal of Clinical Investigation last month, showing how second-generation antisense drugs were effective in ALS mouse and rat models, it served as a vivid reminder that every research investment and discovery adds up.
For people living with ALS and their caregivers and family, every day adds up. ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.
Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.
Our fall Walk to Defeat ALS® season is fast approaching! We talked to people – including Renee Zellweger – about why they come together every year to fight back against ALS.
The ALS Association is fighting back against ALS, in every corner of the country. And this August, as part of our Every Drop Adds Up campaign, we’ve launched an online ALS Auction, which is now LIVE!
We recently announced that we’re providing new funding to allow GNS Healthcare to use artificial intelligence (AI) to create a comprehensive disease model to advance research into ALS. GNS Healthcare will use its powerful machine learning platform, called REFS, in conjunction with the rich Answer ALS patient datasets, which are accessible to clinicians and scientists throughout the ALS research community. The project will be led by Dr. Iya Khalil, chief commercial officer and co-founder of GNS Healthcare.
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.
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.
One day you find you’re having trouble tying your shoes and buttoning your shirt. After many months, numerous doctor visits, and a battery of tests, you’re told you have ALS. An ALS diagnosis is unbelievably crushing. The impact is impossible to fully appreciate until it hits you or someone you know. The disease is a monster, and it only has one direction. You progress until you can no longer eat, speak, walk, or breathe. Research into finding a cure is vital. That’s why I run, bike, and swim.
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.
“Life is full of challenges,” said Gene Connolly. “We get little say in what happens to us, but everything to say in how we deal with it. In fact, our response will define us.”
Frustrated with the limited availability of assistive technology devices for his mother, who was diagnosed with ALS, Dexter Ang quit his finance job, partnered with David Cipoletta, an underwater robotic engineer, and set to work developing technologies that could universally, massively, and quickly improve the quality of life for people living with ALS.
Before the ALS Ice Bucket Challenge, The ALS Association allocated $6 million annually to funding ALS research. After the ALS IBC, the Association has budgeted about $18 million per year to research and has so far committed $84 million to ALS research. From this investment, there has been massive payoff in a significant increase in ALS gene discoveries.
Erin Brady Worsham, an award-winning artist based in Nashville who has lived with ALS for more than 24 years, takes her philosophy about life from golf.
Bad things happen to good people every day. That’s just the nature of life. But it doesn’t mean we stop living and loving. My ALS story officially started on a warm fall afternoon in September 2001. I had been having difficulties with speaking and swallowing for several months. After more than two months of seeing about a dozen different medical professionals, and having more tests than one can imagine, I sat in the small examination room of a local neurologist.
