We are shining a spotlight on one of our current Milton Safenowitz Postdoctoral Program Fellows, Alexander Lin-Moore, Ph.D., a postdoctoral researcher at Brown University.
From July 14-17, the ALS community will be coming together in Texas at ALS Nexus to work on making ALS livable for everyone, everywhere, until a cure is found.
It has now been 85 years since Lou Gehrig stood on the field at Yankee Stadium on July 4, 1939, and delivered his “Luckiest Man” speech as part of Lou Gehrig Appreciation Day. The speech itself has become the stuff of baseball lore, even though no complete recording, on film or audio, remains.
Currently, ALS is considered a “diagnosis of exclusion,” meaning people experiencing ALS-like symptoms often have to undergo a battery of different tests designed to rule out other conditions. This means it takes, on average, 10-15 months from the time a person first notices symptoms to receiving an ALS diagnosis.
Reducing this time to diagnosis is critical to avoid unnecessary testing and medical procedures and for people living with ALS to get access to multidisciplinary care and treatments that can help maintain their quality of life.
In honor of the 20th year of our Milton Safenowitz Postdoctoral Fellowship Program, we are catching up with some of our funded fellows, like Kasper Roet, Ph.D., CEO and co-founder of QurAlis, to find out how the award impacted his research and career.
Since the Ice Bucket Challenge, advancements in assistive technology have significantly improved the quality of life for people living with ALS, helping them to communicate more effectively, maintain independence, and remain engaged in daily activities despite the challenges posed by the disease.
This Global ALS/MND Awareness Day, we want to highlight the illuminating story of how the film “LUKi & the Lights” came about, and how it is helping children from every country and culture who have to face ALS/MND as part of their lives.
Caregivers are the unsung heroes of ALS. Often, they're so busy supporting their loved one, their own physical or mental health takes a back seat. That’s why ensuring caregivers in the ALS community receive the support and assistance they need is critical.
Eleven individuals who joined together for the 2024 Team Challenge ALS Boston Marathon shows that while each runner completes a marathon on their own, the results of the group can sometimes be so much greater, in so many ways. Overall, the team raised over $190,000 for the fight against ALS.
The surge in awareness we saw from the Ice Bucket Challenge helped us to make great strides in ALS advocacy. From new policies to help with care and support for families impacted by the disease, to tremendous increases in governmental funding for ALS research, we’ve seen great progress. But we still have work to do and need your help.
Paul Seaver, the manager of community engagement and events for the ALS Association who oversees major events in the Boston area, has a personal connection to ALS—having lost his father to the disease in 2013. He shares his story on how raising awareness and funds for ALS became his priority, even before taking on the role professionally.
Since the Ice Bucket Challenge, more than 12 new genes have been discovered, bringing the total number of genes known to have a connection to ALS to more than 40, and the first treatment for a genetic form of the disease was approved. We know that better understanding the genetics of ALS will help make it easier to identify those at risk and ultimately prevent new cases of ALS altogether.
Since 2021, June 2 has been celebrated as Lou Gehrig Day by Major League Baseball (MLB) in ballparks across the country -- a day to help spread awareness and raise funds for people living with ALS and their families. Here are some of the events happening across the ALS Association to celebrate this legacy that joins together the baseball and ALS communities.
We know finding ways to optimize treatments and care, and increasing access to care, helps people with ALS live the way they want with a better quality of life. That’s where multidisciplinary care comes in.
Selina Lavonne Rambo wrote the book "Grandpa's Wise Words" for her children to remember the good times they've experienced with their grandpa even though he was facing ALS. She hopes to share with other families with young kids who are affected by the disease.
Before the Ice Bucket Challenge, the lack of ALS awareness only added to the struggle individuals and their families face. The needs of people living with ALS were not well understood and services were often lacking. After the Challenge, people knew what ALS was, but we still need more support.
ALS took away Matt Fleming's ability to run, something that he LOVED to do. But ALS can not stop Matt from moving forward or pushing others to move forward in the fight against the disease.
One of the leading researchers working to better understand what is going on at the earliest stages of the disease is Michael Benatar, M.D., Ph.D., a professor of neurology at the University of Miami. Through his research, he is identifying biomarkers that could be used to predict who is likely to develop ALS and when, as well as helping develop treatments that could potentially delay or prevent the onset of symptoms. And we are thrilled to announce he will be joining us at ALS Nexus in July to talk about this very important work.
You can sum up the kind of pediatrician Jim Plews-Ogan was with two words: house calls. During his more than 20 years of practice for adolescents and children in Charlottesville, Virginia, Jim still made house calls when needed as part of the personalized care he offered. Not surprisingly, folks like that end up having deep ties to the community they serve. Even a quick trip to the grocery store for Jim and his wife Peggy often means multiple stops to chat with parents of patients and former patients.
