Amber Letters is a wife, a mom, a sister, and was a part-time caregiver for father who lost his battle with ALS this year. To honor her father’s legacy, she is sharing her family’s personal story, their journey with ALS and how they found hope along the way.
Eddie Ilarraza was diagnosed with ALS in 2002, and while his body may have slowly succumbed to the disease over the years, his mind and his spirit have not. Eddie graciously shared his story about his personal journey living with ALS, and how his determination to do whatever it takes to achieve his hopes and dreams has prevailed.
This week marked a historical moment in the fight against ALS with the official launch of Lou Gehrig Day, now an annual event across Major League Baseball to help spread awareness and raise funds for people living with ALS and their families.
Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS.
People with ALS on Tuesday called on the FDA to use its existing authority and the flexibility it promised the ALS community it would use to make experimental drugs that show incremental benefits available as quickly as possible. The comments came in a “We Can’t Wait” Action Meeting with FDA organized by The ALS Association.
We are deeply grateful to the eight speakers who shared their wisdom and personal experience with the FDA, as well as the more than 150 others from the community who have done so online. We continue to hear that people with ALS want effective treatments now, even if they offer modest benefit, and are willing to face considerable uncertainty and risk to do so.
The ALS Association Massachusetts Chapter announces its partnership with The Boston Red Sox and Worcester Red Sox to celebrate the 1st Annual Lou Gehrig Day. Together we are thrilled to offer two exciting opportunities for our Massachusetts ALS community.
Eric wanted to share his story about his journey with the world, about his colorful past and his inspiring present living with ALS. So, he and his family joined up with filmmaker David Gaynes and his team at DG Filmworks, creating a heartening documentary, “A Spirit in Flight”; an intimate portrait of Eric, his life, and how he is living life to the fullest after his diagnosis with ALS.
People living with ALS and their caregivers face substantial financial burdens accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and tremendous debt for individuals in the ALS community. No one understands this more than Jimmie and Dennis Thomasson in Mobile, Alabama.
Many believe that all it takes is one song to bring back 1,000 memories, moments we hold dear and relive in our minds every time we listen to it. No one knows this better than the Vickers family, sharing their beautiful memories and storytelling through music, rhythm and melody.
Later this month, the ALS Association will host a virtual session focused on the urgent need for timely access to new therapies. Leaders from the U.S. Food and Drug Administration (FDA) and industry companies will listen to people living with ALS speak directly about their expectations for their experiences with the disease and how important it is to have timely access to therapies that have the potential to provide incremental benefit in improving how people feel, function and live.
To help empower kids in the fight against ALS, The ALS Association is celebrating the third annual ALS Youth Action Day on Saturday, May 15. It’s a day where kids across the country can take the ALS Youth Challenge and use the power of their creativity to help raise awareness and critical funds that help researchers around the world look for treatments and a cure while enabling people with ALS to live longer, higher quality lives.
Susan Seabrook is a wife, a mom, a sister, and a caregiver for her mother living with ALS. In honor of her mother on this Mother’s Day, she is sharing her family’s personal story, their journey with ALS and many of the moments she cherishes most.
Executive Director John Hedstrom of The ALS Association Massachusetts Chapter discusses how the efforts of the Chapter compliment May as ALS Awareness Month. This month's letter from our chapter's executive director outline exciting details about coming programs, COVID-19 policy updates, event developments, and advocacy initiatives.
Sally Dwyer is the Director of Mission Strategy & Integration for the Mid-America Chapter at The ALS Association. She has worked with the Association for 26 years and has experienced many moments and milestones throughout her career serving people impacted by ALS.
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.