Fighting ALS on every front through research, care services, and advocacy. Community guidelines: https://xitter.cf/t.co/Af1fOXXTLG

Arlington, VA
Joined February 2009
ALS affects nerve cells in the brain and the spinal cord. As these cells deteriorate, people living with #ALS lose the ability to walk, talk, eat, and eventually breathe. Learn more and find resources: bit.ly/Understanding-ALS
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Thank you to TN Sen. Bo Watson and Rep. Esther Helton-Haynes for joining us yesterday for a meaningful visit and thoughtful discussion at the Erlanger ALS Clinic in Chattanooga. A big thank you as well to the families who shared their experiences, the clinicians and amazing ALS clinic staff, and the whole Erlanger team for making it a day to remember! @SenBoWatson @erlangerhealth @estherhelton5
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Medicare open enrollment period is going on now! During this period, you can review your Medicare coverage and make changes for the next year. If you are not familiar with your plan or a first time enroller, we encourage you to check out our resources to make sure you are covered. als.org/navigating-als/finan…
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For 25 years, Wade Petrich proudly resisted buying an air conditioning unit, relying instead on Lake Superior's legendary cooling breeze. This summer, Wade finally gave in. What changed wasn't the weather alone. It was the reality of helping his wife navigate life with ALS during a summer marked by heat and wildfire smoke. In this personal reflection, Wade shares how a simple household appliance became an became an oasis during a challenging summer. als.org/blog/oasis-firestorm
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Don't Wait! Tomorrow is the deadline to sign up for the Vital Sounds: Music as Medicine Concert a virtual concert for people living with ALS and their families held by our Creative Pursuits Program. The concert will be held on Thursday, October 29 from 1 to 3 pm CT. The Vital Sounds Initiative (VSI) by Project: Music Heals Us transforms the healthcare experience into a space of shared beauty, dignity, and deep connection. Don't delay! Register today: als.org/support/programs/cre…
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ALS is devastating. Insurance denials make it worse. We launched "We Are Undeniable," a campaign providing tools and support to help families challenge insurance denials and navigate the appeals process. Together, we can bring attention to this issue and push for lasting change. Jeremey Snyder was diagnosed with SOD1-ALS just before last Christmas. His doctor prescribed Qalsody, first gene specific treatment that slows down progression and in some cases even helps regain some of the lost function. Insurance denied coverage almost immediately. We worked with Jeremey and his mom, Rosemary, to help overturn the denial. Too often, people with ALS are denied coverage for medications, equipment, and even non-invasive ventilators. Even when a denial is overturned, delays can have lasting consequences. Every week spent fighting an insurer is time families can't get back. Facing an insurance denial? Visit ALS.org/undeniable for free tools and resources to challenge insurance denials. We've got your back.
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We’re leading the fight for policies that improve life for people living with ALS and their caregivers. At the local, state, and federal levels, and with the help of our advocates, we educate and mobilize policymakers in a nonpartisan way to achieve one mission: make ALS livable and ultimately cure it. There is strength in numbers! Join our incredible network for advocates and become an ALS advocate today! als.org/advocacy
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Across the country donations from people like you help individuals like Lisa from Minnesota live more independently. With the help of her Obi Feeder, she can enjoy meals without relying on assistance from others.  An Obi Feeder is an assistive, motorized robotic device designed to help people with limited or no upper-extremity mobility eat independently. Your support provides vital accessibility tools to people like Lisa who are living with ALS. Your gift today can help someone like Lisa regain greater independence and dignity. Donate now and make an immediate impact. als.org/donate
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"Why do I walk? I walk for my son. In late 2023 I was diagnosed with ALS, just before my 34th birthday. In a radical act of choosing life and hope, my husband and I welcomed our son in early 2025. While I am not always the parent I imagined myself to be, I have found that motherhood is the driving force in my fight against this disease. Living with a progressive disability and terminal diagnosis has led me to many revelations. But my most recent and relevant is that ALS is random. It did not choose me, just as it did not choose the beautiful and wild friends that I have made within this community. ALS is random. ALS is not rare. I walk and I fundraise for myself, for my family, and for the next person who is welcomed into this terrible club. Join me in the fight." - Kiah Coble, Vermont Walk to Defeat ALS Ambassador, Living with ALS. Support people like Kiah by participating in a Walk to Defeat ALS event near you. walktodefeatals.org
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ALS is devastating. Insurance denials make it worse. Today we are launching "We Are Undeniable," a campaign providing tools and support to help families challenge insurance denials and navigate the appeals process. Together, we can bring attention to this issue and push for lasting change. “Not medically necessary.” Kayla Gonzalez, a mom of two living with SOD1-ALS, was prescribed Qalsody by her doctor. It was helping, until her insurer denied coverage in a single sentence. Too often, people with ALS are denied coverage for medications, equipment, and even non-invasive ventilators. Even when a denial is overturned, delays can have lasting consequences. Every week spent fighting an insurer is time families can't get back. Facing an insurance denial? Visit ALS.org/undeniable for free tools and resources to challenge insurance denials. We've got your back.
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Jim Trombly is no stranger to the spotlight. A keyboardist from Detroit, Michigan, known on stage as Jimmie Bones, Jim was diagnosed with ALS in 2024. Although he is not able to do the things that he loves in the same way, he is not letting ALS stop him from sharing laughter with his family and music with the world. In his own words, he recounts his road to diagnosis and how ALS has impacted his life. als.org/blog/keys-cure-guest…
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When it comes to raising funds and awareness for ALS, the sky is the limit! Share your creative idea in the comments and help make a difference for people living with ALS and their families today. Get your event started: als.org/defeatalsyourway
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ALS research gives hope. Your donation fuels critical discoveries, allows people living with ALS to access new forms of mobility, accelerates new treatments, and brings us closer to a cure. None of this is possible without your support. Help us continue advancing research and improving lives by making a donation today: als.org/donate
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Interested in advancing ALS #research? People living with #ALS can join the Registry and complete 'Risk Factor Surveys'. Researchers use the surveys to help identify potential causes of ALS. Join today: als.org/research/participate…
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There's still time to participate in a Walk to Defeat ALS event this year! Gather your friends and join us for a day connecting with others, spending time in community, and raising funds to support people living with ALS and advance ALS research. Sign up today: walktodefeatals.org
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We are heartbroken at the passing of Pat Dolan, a cornerstone of our community. When Pat Dolan was diagnosed with ALS in July 2016, he knew the life he thought he had planned would be forever changed. He and Mara, his wife of 24 years, enjoyed many of their favorite activities: hiking, traveling and finding the perfect IPA. Surely ALS would now alter their path. During one of his ALS clinic visits, he recalled one couple being forced to drive 170 miles from every three months to receive the closest clinic care available while another woman drove herself 80 miles round trip. “That experience led me to map the ALS clinics to understand access to care and identify the underserved communities.” Pat said. With the help of his friends and colleagues, Pat created the ALS Clinic Locator, a resource that would enable the ALS community to locate ALS multidisciplinary care via city or zip code. We will miss Pat deeply but his wonderful spirit and contributions to the ALS community will serve as an incredible legacy for him.
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The fall season is here, which means that hoodie season is here! Grab an ALS hoodie for the fall season today! als.org/shop
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For Eric Hagen’s best friend, Nathaniel, who was diagnosed with ALS in June 2024, the disease has taken away many physical abilities, but it has never diminished his spirit, humor, or optimism. Witnessing Nathaniel’s journey has given Eric a firsthand understanding of ALS’s devastating impact and reinforced the importance of supporting people and families impacted by the disease. In this guest blog post, Eric reflects on Nathaniel’s resilience and the strength that extends far beyond a diagnosis. Read more: als.org/blog/strength-beyond…
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We love seeing all of the costumes and team spirit at all of our Walk to Defeat ALS events across the country! From superheroes to inflatable dinosaurs and dancing mascots, the Walk to Defeat ALS 2026 was bursting with creativity, energy, and heart. We aren't allowed to have favorites, but let’s be honest…some folks really showed up with their costumes! Didn't see your photos? Share them and make sure to tag us!
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The ALS community has lost one of its most powerful voices. Brooke Eby was diagnosed with ALS in 2022 at just 33 years old. Instead of retreating, she made a choice that changed how the world sees this disease: she shared it all, with honesty and a sense of humor that made it impossible to look away. She brought her employer Salesforce into the fight and raised more than $1 million for research. She helped build ALStogether so people with ALS could find one another. And she shared her story with the Today Show, The New York Times and People. In 2024, the ALS Association was proud to name her an ALS Hero. "Brooke made ALS impossible to ignore, and she made it impossible not to love her while she did it," said ALS Association President and CEO Calaneet Balas. Brooke died Thursday at 37. We will keep going until ALS is livable for everyone, and then cured. Read our full statement: als.org/stories-news/brooke-…
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“No one should have to choose between their physical health and their financial future,” - @AsmLoriDWilson Today, in a significant victory for people living with ALS and their families, the Safeguarding Genetic Information Act (AB 1798) has been signed it into law by Governor Newsom in California, establishing the state as a national leader and global model for genetic privacy protection. For people and families living with ALS, the law means they can still use genetic information to guide their medical care without worrying it will lead to discrimination against them. Genetic testing plays a critical role in diagnosis, treatment, clinical trials, research, and personal medical decision-making. Californians can now move forward with genetic testing with confidence. Gone are the days of misuse of results and testing of avoidance out of fear of discrimination from insurers. AB 1798 changes that story.
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