The ALS Association

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-…

Last week, we joined advocates at the CA Senate Health Committee to support the California Science and Health Research Bond Act— led by @Scott_Wiener — a bold proposal to invest $23 BILLION in lifesaving research, including research for ALS. Through our advocacy, ALS is now explicitly named in the bill and we were proud to be the only ALS organization at the hearing, standing alongside the patient advocates who made it happen. Just 1% of the proposed funding for ALS would surpass what the Ice Bucket Challenge raised. Learn more: als.quorum.us/campaign/CA-AL…

For the first time in the history of ALS, certain people living with SOD1-ALS are recovering some lost function. Something as small as wiggling toes again. Using an index finger to send a text. For someone living with #ALS, a disease that relentlessly robs people of movement, voice, and independence — these moments are nothing short of extraordinary. This is what research and progress can do for people living with ALS. Right now, only one treatment exists that can restore some lost function and it only reaches 2% of people living with ALS. For the other 98%, there is still nothing. That gap is unacceptable. And closing it is exactly what we are doing something about. Today, 100% of your donation will go to ALS #research, because it’s time to #AcceleratetheCure. als.org/accelerate

Don’t let your voice go unheard! Living with ALS means facing important decisions about your care - and your voice matters in every conversation. Join us our upcoming webinar Your Care, Your Voice: Becoming an Active Partner in ALS Decision-Making on April 14 at 2 p.m. Together, we'll explore ways to become an active partner in your healthcare journey, learn tips on having conversations that can help you express what matters most, and review practical tools designed specifically for the ALS community. Register today: als.org/webinars/your-…

Our #ALSFocus Assistive Technology for Everyday Activities Survey is now open! If you are living with #ALS or are a current or former caregiver, we want to know how assistive technology fits (or doesn’t fit) into your everyday routines. Help us understand where the needs of the ALS community are being met and where gaps remain — share your insight: alsfocus.org

Happy #OpeningDay Baseball Fans We are teaming up with the @Phillies pitcher Aaron Nola again this season to strike out ALS! Aaron Nola lost his uncle to ALS in 2021. Since then, he's turned every strikeout into a statement — raising over $350,000 for the fight to make ALS livable and cure it. That money funds real progress: research that's helping us understand why ALS happens, and how to stop it. Every K gets us closer. This season, join Aaron and let's #StrkeOutALS. als.org/strikeoutals

"The ALS Association supports me with a caring case manager who attends my clinic appointments with me. She helps me find resources like equipment grants or transportation information. (Our wheelchairs are very heavy and require special medical transportation.) My case manager even accompanied me to City Hall when the Mayor’s office of Kansas City declared May as ALS Awareness month. We were given a proclamation to display at the local ALS clinic." - Jennifer Robb, Living with ALS. Join Jennifer and urge your local lawmakers to declare May as ALS Awareness Month! Public recognition from state leaders raises critical awareness and shows families affected by ALS that they are seen, supported, and not facing this disease alone. Learn how you can contact your lawmakers: als.quorum.us/campaign/ALS-A…

Everyone's celebrating trips to Disney World or Universal Studios, but we're celebrating something even bigger: ALS Nexus this summer! Whether you are a family navigating an ALS journey, a lab team on the verge of a breakthrough, or a clinical crew providing essential care, we believe the best way forward is together.  Don’t delay! Register 4 people and the 5th registration is on us!  Register TODAY: alsnexus.org

Every year, we review policies across all 50 states to see how well they protect and support people living with ALS. However, this year we are taking a closer look at several states, today we are spotlighting Georgia. Georgia’s Report Card: 🟡 Prior Authorization Reform: B 🟠 Caregiver Support: D 🟠 Medigap Access & Affordability: D 🟠 ALS Care Services Funding: F 🟠 Genetic Discrimination Protections: F Find other state report cards and learn how you can make an impact in your area. als.org/blog/state-rep…

Happy #PiDay! Every Walk to Defeat ALS feels a little like the community it calls home. A walk in Florida? Probably Key Lime. Michigan? Cherry all the way. Texas? Definitely Pecan. What kind of pie does your local walk feel like? Tell us below and then find your walk at: walktodefeatals.org

When people living with ALS and their families walk the halls of the Capitol, things change. This week, our advocates brought their stories and their fight to legislators in Tennessee. Thank you to Representative Robert Stevens, @SenShaneReeves, @bobfreemantn, and Senator Becky Massey for making time for our community. Your state needs advocates, too. Join us: als.quorum.us/register/

Thank you to our amazing volunteers and staff who went to Capitol Hill advocating for more ALS research funding and better policies for people living with ALS! They shared their personal connections to ALS with lawmakers and legislative staff, most of whom also shared their commitment to defeating ALS. #ALS #advocate #CapitolHill #WashingtonDC #alsawareness

Spring break is approaching and ALS can make taking a vacation or traveling to see family challenging. If you are planning to travel, we encourage you to check out our webinar on travel and learn about the 3 biggest keys to traveling the world successfully. You will learn about the process and learn travel agent hacks to ensure complete accessibility, with the goal of making traveling with ALS easier and less stressful. Check it out! als.org/webinars/now-t…

It’s the moment you have finally been waiting for! Registration is open for ALS Nexus 2026. Register today: alsnexus.org Join us in Orlando, Florida from August 23 - 26, where leaders in ALS research, care, and policy come together to turn expertise into impact. ALS Nexus is more than a conference— it’s an opportunity to share bold ideas, collaborate across disciplines, and drive real, measurable progress.

For years, the ALS community has been asking a critical question: “What causes ALS and can we prevent it?” Yesterday, Congress took a step toward answering it. The HEALTHY BRAINS Act has been reintroduced — and we are proud to have been a leading voice in this moment alongside our community, advocates, and coalition partners. This landmark legislation, originally championed by former Representative @JenniferWexton would be the first time federal funds are directed toward preventing ALS and other neurodegenerative diseases, by creating a first-of-its-kind research center at the NIH focused on the environmental and occupational factors that may trigger ALS. We are deeply grateful to @RepSuhas and @RepGusBilirakis for their leadership in moving this critical fight forward — and to our dedicated advocates. als.org/stories-news/n…

In the latest episode of the ALS Matters podcast, Alex Meixner, VP of state policy and Diana Arevalo, managing director of advocacy break down our state ALS policy report cards, what's happening in legislatures across the country, and exactly how YOU can make a difference close to home. Watch NOW: youtu.be/XFbSm7fdjlg

Grief in ALS is complex. Our new grief support page offers guidance for caregivers and families before, during, and after loss. We understand how difficult these feelings can be and we have resources on our website to help. You don't have to figure this out alone. als.org/navigating-als…

When describing ALS, a distinction is usually made based on whether or not the disease runs in a family. - Sporadic ALS (90-95% of cases): This is the most common form. It affects people with no known family history of the disease. - Familial ALS (5-10% of cases): This occurs when the disease runs in a family, usually due to an inherited genetic mutation. Whether the disease is familial or sporadic, the journey is unique for everyone. Research is ongoing to find better treatments and, ultimately, a cure for all. Learn more: als.org/understanding-…

@Sharon808Chizo We are sorry to hear that, Sharon. Please let us know if we can offer support or resources.

@alsassociation My husband was diagnosed with ALS last year but symptoms began in early “2024” It’s been a difficult transition for both of us. It takes a lot of patience and understanding on my part and for my husband it’s been really difficult accepting having this incurable disease!

ALS is called a rare disease. But when it touches your family, your home, your future — it doesn’t feel rare at all. It feels urgent. It feels overwhelming. It feels like everything. On Rare Disease Day, we’re reflecting on what “rare” really means — and why awareness, advocacy, and community matter more than ever. Read the blog and join us in making ALS livable until we cure it. als.org/blog/rare-dise…