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ALS Association
Our Response to the FDA’s Latest Letter and What We’re Doing to Keep Up the Pressure
Following our We Can’t Wait Action meeting with the FDA, we sent a letter to the agency asking it to reaffirm its commitment to the 2019 ALS Guidance and provide us with a detailed report showing how it has implemented the guidance. This week, the ALS Association received a response from Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research.
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ALS Association
Spread the Word: It’s Global ALS/MND Awareness Day
Every year on June 21 the International Alliance of ALS/MND Associations celebrates Global ALS Awareness Day, a day of recognition of ALS/MND – a disease that affects people in every country around the globe.

ALS is not unique to the US, it’s a global problem. It does not discriminate based on race, ethnicity, socioeconomic status, or region. People are living with the disease all over the world, and for every person diagnosed, the impact of the disease will forever be felt by their loved ones.
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ALS Association
Health Disparities and ALS
Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
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ALS Association
ALS Association Wraps Up Virtual Advocacy Conference with Calls on Congress to Act
ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.
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ALS Association
How Our Family Found Hope in the Fight Against ALS
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.
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ALS Association
Eddie Ilarraza: Doing Whatever it Takes to Make His Dreams Come True
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.
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ALS Association
Lou Gehrig Day: An Amazing Day of Awareness for the ALS Community
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.
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ALS Association
ICYMI: We Can’t Wait Action Meeting Pushes FDA on Access
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.
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ALS Association
We Can't Wait Action Meeting with FDA: What We Heard and What's to Follow
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.
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ALS Association
A Spirit in Flight: One Man’s Journey Living with ALS
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.
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Alabama Chapter / ALS Association
ALS and the Financial Burdens it Presents to Families Living with the Disease
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.
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ALS Association
Warm Summer Night, a Moment the Vickers Family will Never Forget
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.
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ALS Association
ALS Association to Host FDA, Industry in “We Can’t Wait” Action Meeting
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.
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ALS Association
ALS Youth Action Day Celebrates its Third Year
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.
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ALS Association
My Mother, the Heartbeat of Our Family
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.
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ALS Association
Behind Recent Changes at CMS to Expand Telehealth
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.
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