The ALS Association

Join us for ALS Nexus in Dallas, Texas this August 11-14, 2025. Don’t miss this chance to connect, collaborate, and change the future of ALS. Secure your spot TODAY: alsnexus.org #ALSNexus

Today on #RareDiseaseDay, we honor the 350 million people worldwide affected by rare diseases like ALS. Your ALS story matters. When you share your experience, you help drive change, influence policies, and bring the ALS community together. We invite you to share your story with us for an upcoming blog series to highlight the real impact of ALS. Together, we can make ALS feel less rare and move closer to a world without it. Read our latest blog and share your story: https://lnkd.in/ebNVNt-h

350 million people worldwide are affected by rare diseases—yet too often, they feel alone. Every 90 minutes, someone is diagnosed with ALS, and another life is lost to this relentless disease. But there is power in connection. By sharing your ALS story, you are helping influence policies, encourage companies to support the cause, and most importantly, unite the ALS community to make it feel less rare. In honor of #RareDiseaseDay, we ask you to share your stories and will be featuring some of them in an upcoming blog series to shine a light on the real impact of ALS. Your voice can inspire change and help us move closer to a world without ALS. https://lnkd.in/eiWqNBDJ

Lindsay and Brian are advocating in Annapolis, Maryland for the Genetic Testing Protection Act. Brian has lost 4 family members to ALS and is currently living with the FUS gene. With the help of an entire team of advocates they are speaking with members in congress to advocate for people who are living with the genetic form of ALS to not be discriminated against from life, long-term or disability insurers. You can join them in advocating in your state by visiting: https://lnkd.in/dD-vac6

Urge your Members of Congress to join the ALS Caucus and be a champion for the ALS community! This bipartisan group drives awareness, advances policies, and pushes for research to fight #ALS. Take action today! https://lnkd.in/eEHQURUS #ALSAdvocacy

What is ALS? ALS is a progressive disease in which a person’s brain loses connection with the muscles, slowly taking away their ability to walk, talk, eat, and eventually breathe. There is no cure for ALS, but there is hope. Share this graphic to spread awareness of ALS.

We are committed to leading the fight against ALS through global research, advocacy, and providing critical services for those living with ALS. We couldn't do this important work without your support. Every donation, every volunteer hour, and every share of our message moves us closer to a world without ALS. Thank you for making a difference. Everyday we are one step closer to making ALS a livable disease until we can cure it.

Shelby shares her experience as a 23-year-old person living with ALS and the battle she fought to get approval for an FDA-approved treatment. After being denied multiple times by Blue Cross Blue Shield of Texas, she was finally able to start her treatment after months of fighting. Sadly, Shelby's story isn’t unique—many people living with ALS face similar struggles with insurance denials. Our Advocacy team is working hard to fight for access and we recently launched the ALS Insurance Navigator to make the appeals process easier. Learn more insurance denials from CNBC. https://lnkd.in/eJPW-_3F

"Killing me softly with his song..." The world lost a true legend today. Roberta Flack, known for her unforgettable voice, passed away after a brave battle with ALS.    Her timeless music will continue to inspire and touch hearts forever. Thank you for the magic, Roberta. You’ll never be forgotten. https://lnkd.in/dumU2pni

Are you researching to find new ways to support people living with ALS or finding a cure? Share your research with the ALS community! The ALS Nexus 2025 Poster Session is an opportunity to discuss how you are helping make ALS a livable disease with the diverse group of people who attend the conference. Established and early-career investigators, health care professionals, fellows, graduate students, and medical students are invited to submit an abstract by Tuesday, April 1, 2025, 5 p.m. ET. Abstracts should be no more than 250 words and include the hypothesis/objective, brief methods, results, and conclusion. Submit your abstract TODAY: https://lnkd.in/enG2Be62