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 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.
Nothing has brought more ALS awareness like the Ice Bucket Challenge during the summer of 2014. The viral sensation spanned the globe, forever changing the future and trajectory of ALS. And the awareness and funds generated by the social media phenomena put us on a path to end this disease.
After being the primary caregiver to his wife of 30 years before she passed away from disease in 2021, Bob Scott wasn’t sure he ever wanted to have anything to do with the letters “ALS” again. But a burning in his gut told him that he should do something to help; that he could try and make it all a bit more “fair.”
In honor of National Volunteer Month, we are recognizing Dylan White for giving his time to photography and video production for us. Dylan's father was diagnosed with ALS in 2017, and he soon realized he wanted to use his skills to give back to the ALS community.
We've shared the story of Wendy and Michael Wilson, a family affected by ALS; but, they both still volunteer their time with us, serving on the local community leadership council in Oklahoma and other committees focused on care services and caregiving.
Dana Julian's great grandfather passed away from ALS and is part of her "why" she volunteers for the cause. Read more about how she got involved with the ALS Association.
Renovation Hunters joined the fight against ALS when they took on an extensive cabin renovation to help a family impacted by the disease in Pennsylvania. The series includes three exciting episodes of the reno beginning tomorrow, April 5, at 8:30 p.m. on the Outdoor Channel. Read more about the family’s journey and don’t forget to tune in to watch!
In recognition of National Volunteer Month, we’re shining a spotlight on the many different ways you can get involved by providing help, support, and hope to the ALS community. Volunteering is a powerful way to make a positive impact in any community. And when it comes to supporting people impacted by ALS, each and every volunteer action makes a difference.
ALS Nexus brings together the perspectives of the ALS community to connect, collaborate, and change the future of ALS. This is more than a conference – it’s an opportunity to spark new ideas and accelerate progress towards our goal of making ALS a livable disease until we can cure it.
When Jules and Maria started a podcast in 2019 to tell their story it wasn’t about ALS. But even though Jules’ ALS diagnosis in 2020 would change that, their story is still about so much more—including life, love, and even comedy.
Today is Rare Disease Day, an event that takes place worldwide, typically on the last day of February each year, to help raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. In recognition today, Kristina shares what it’s like to be a ALS caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
Amanda Howard has always used writing to process things personally and professionally. When she faced the challenges of living with ALS, she started blogging about it - at first for herself, and then for the community.
Wendy and Michael Wilson live in Oklahoma City with their daughter, Londyn. Michael was diagnosed with ALS in 2017 at the age of 35. When she was just 10 years old, Londyn made sure her parents could celebrate their anniversary in style. Wendy tells us how.
Stories have connected us for generations, often providing impact and making waves of change. Discover some of the most powerful stories from the ALS community and share to help spread awareness of this disease today.
People with ALS already experience stiff muscles in their hands, arm, legs and feet, and winter temperatures can make this situation worse. Cold weather causes muscles to contract and become tight, which can be painful. However, people living with ALS can still enjoy this time of year. Here are some tips on dealing with cold weather for people affected by ALS.
There is no doubt that 2023 saw significant breakthroughs in advocacy, care and research. Here's a look at the top ten blogs of the year that covered it all.