The ALS Association

Fighting ALS on every front through research, care services, and advocacy. Community guidelines:

[The ALS Association @alsassociation]

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: https://t.co/KIJ9USzTov

[The ALS Association @alsassociation]

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: https://t.co/aAiPnxYk3X

[The ALS Association @alsassociation]

“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.

[The ALS Association @alsassociation]

Thank you Senator @lisamurkowski, Senator @ChrisCoons, @RepMikeQuigley & Rep. @KenCalvert, for your bipartisan leadership in passing the ACT for ALS Reauthorization!

Your commitment to advancing ALS research and expanding access to treatments, including access to investigational therapies - priorities that make a difference for the ALS community.

#ACTforALS #EndALS

[The ALS Association @alsassociation]

We did it!  The Act for ALS reauthorization was passed by Congress!

Because of ALS advocates like YOU, progress in ALS research continues because of this bipartisan legislation.

Thank you for raising your voice and helping make this victory possible!

#ACTforALS

[The ALS Association @alsassociation]

Our mission is to make ALS livable and cure it. We cannot do that without our nationwide network of ALS Association care teams that provide people living with ALS and their family and loved ones with support in communities across the country.

The professionals in this network offer many care and support programs that were designed with one thing in mind – enhancing quality of life and supporting families impacted by ALS.

Find an ALS Association care professional near you by visiting: https://t.co/DeohTmlFDh

[The ALS Association @alsassociation]

We're grateful to see @Fareway_Stores bring real energy to this year's Round Up at the Register campaign in support of the ALS Association. A special thanks to CEO Reynolds Cramer who kicked things off with the Ice Bucket Challenge and sparking something special when managers across the company joined in. Thank you for bringing this genuine momentum and raising funds for ALS research, advocacy, and care services.

This would not be possible without the incredible generosity of every customer who rounded up or contributed extra at checkout across Fareway's seven-state region. We are so grateful for their support and commitment to fighting ALS!

[The ALS Association @alsassociation]

Each year, the ALS Association’s ALS Hero Award recognizes individuals who have made an extraordinary impact on the Association and the broader ALS community. This prestigious distinction celebrates those whose dedication, advocacy, and service have significantly advanced the fight against ALS — whether through fundraising, research support, caregiving, awareness efforts, or community leadership.

This week, we are spotlighting Alecia Bailey, ALS Hero Award recipient, and her story. When her husband, Keith, passed away from ALS, Alecia chose to carry on his fight to defeat ALS. Beyond fundraising, she quietly connects families to resources and equipment and has helped advance Florida's Bitner Plante Initiative for state ALS funding. Through a decade of leadership, advocacy, and quiet acts of generosity, Alecia has shown what it means to turn loss into a lasting force for good.

Read more: https://t.co/8IoPLoZMg7

[The ALS Association @alsassociation]

We are heartbroken at the passing of Bobbi Jacobsen, a cornerstone of our community.

Bobbi passed away just two days after her 77th birthday, following a nearly 30-year battle with ALS that began with her diagnosis in 1996. Bobbi became a beloved fixture of the Minnesota ALS Walk to Defeat ALS, the first of its kind in the country. She has participated every year of the walk's existence, more than any other person living with the disease in the organization's history. She also traveled to Washington DC as an ALS advocate and became a voice for those that couldn't travel. She was known and loved as part of a wide community of family, friends, and fellow walkers who came to call themselves "Bobbi's Buddies." Our hearts go out to her family and friends during this time.

[The ALS Association @alsassociation]

After losing her mom to ALS, Makenna Judy turned her grief into purpose, running the Sydney Marathon with Team Challenge ALS® to raise awareness, raise funds, and honor her mom’s legacy.

Read how every mile, from the starting line to the finish at the Sydney Opera House, became a powerful tribute to the woman who inspired her.
https://t.co/sDv6taUebS

[The ALS Association @alsassociation]

Happy Birthday to Chris Johnson!

On and off the field, we have been inspired by your determination, bravery and vulnerability to share your ALS diagnosis with the world and raise funds and awareness to fight this horrible disease. It has been awesome to see the entire football community rally behind you to raise awareness for ALS. Thank you for shining a spotlight on this amazing ALS community and moving the ball closer to a cure.

Happy Birthday to the legend himself Chris Johnson!

[The ALS Association @alsassociation]

The House has left for election recess, but the Senate can still act.

The ACT for ALS authorization expires Sept. 30. Tell your Senators to pass the House-passed ACT for ALS Reauthorization (H.R. 8205) and send it to the President’s desk.

Take action: https://t.co/vyVOVx6xXG

[The ALS Association @alsassociation]

Happy #FirstDayofFall! In recognition of the changing season, what better way to take advantage of the fall weather than by getting outside and supporting ALS research and care at the Walk to Defeat ALS events? Find a walk near you by visiting https://t.co/xygeTtg7J1.

[The ALS Association @alsassociation]

ALS breakthrough!!

Ulefnersen, an experimental treatment for a rare genetic form of ALS that often strikes young people (FUS-ALS), succeeded in its Phase 3 trial. It's the second antisense therapy to show it can change the course of ALS, bringing new hope that more types of ALS can be treated this way!

This journey began with an amazing young woman named Jaci Hermstad, whose courage inspired the drug first named jacifusen in her honor. Only because of supporters like you, have we helped fund the early research that led to today. Jaci passed in 2020, but her legacy lives on in every person this treatment may help.

Ulefnersen is not yet approved. For families facing FUS-ALS, every month counts, and we're urging Otsuka, Ionis, and the FDA to move with urgency so people can get access as soon as possible.

Today, we are thinking of Jaci and her family.

Read more: https://t.co/aiuNyRh5sL

[The ALS Association @alsassociation]

Hospice is often surrounded by fear and misconceptions, yet it can be one of the most valuable sources of support during the ALS journey. Join us next month on October 27 at 2 pm ET for our upcoming webinar: An Honest Look at Hospice and ALS. Together, you will join us for an honest discussion about what hospice care looks like in ALS, what to expect from referral through end of life, and how to make the most of the services and support available to you and your family. Learn more and register today: https://t.co/DeGW8ZlM5h

[The ALS Association @alsassociation]

We're dedicated to providing you and your loved ones with the information, support and tools you need free of charge. Whether you are a caregiver or living with the disease we offer state specific and nationwide programs. Discover our numerous catalog of free services and programs: https://t.co/Or0vrYR8kx

[The ALS Association @alsassociation]

James was diagnosed with ALS in 2015, but that has not stopped him from raising awareness and funds for ALS. The ability to raise funds at the Walk to Defeat ALS is important to him because "every donation is a step towards improving someone’s life as well as gets us closer to moving forward from terminal to livable to a sustainable cure. Every donation helps this vision become a reality!"
Support people like James and participate in a Walk to Defeat ALS event near you! https://t.co/AzsjnF8cP7

[The ALS Association @alsassociation]

Each year, the ALS Association’s ALS Hero Award recognizes individuals who have made an extraordinary impact on the Association and the broader ALS community. This prestigious distinction celebrates those whose dedication, advocacy, and service have significantly advanced the fight against ALS — whether through fundraising, research support, caregiving, awareness efforts, or community leadership.

This week, we are spotlighting Allison Bulat, ALS Hero Award recipient, and her story. When Allison lost her husband to ALS in 2016, she turned her personal loss into purpose, dedicating her life to advocating for patients and caregivers. She has served on numerous ALS committees and task forces, shaping clinical trial design and patient advocacy. Her work has made ALS research and care more inclusive, bridging lived experience with scientific progress.

Read more: https://t.co/PakrDRP601