For decades, ALS has been a fatal disease without any cures and no significant life-extending treatments. Making ALS a livable disease means significantly longer lives for people with ALS, greater quality of life, and that some people are even prevented from getting ALS. We believe that with the right focus, and enough resources, this is achievable. To get there, we’re going to need to find new treatments and cures, optimize current care and treatments, and prevent or delay the harms of ALS. All of this work will get us closer to our world without ALS.
|
|
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.
|
|
Walk To Defeat ALS 2021
Registration for the 2021 Greater Sacramento Walk to Defeat ALS is now open! This year, you can pick your favorite pandemic-proof option: 1) Walk with us during our socially distanced Walk to Defeat ALS on October 10th, 2021 OR 2) Walk Your Way and spread ALS awareness in your neighborhood! Register here and be sure to check in with your Walk Coach Kristen Montgomery at (916) 367-3097 if you have any questions!
|
|
A huge shout out to everyone who participated in our first ever ALS NorCal90 Challenge! We loved watching our athletes define their 90 and crush their goals! This will be a new annual event for us every May so keep your eyes peeled for future announcements and challenge yourself to reach for the stars, while helping us fight ALS. A big thanks to Morgan Ramos who crushed her goal and raised $2,500 for people living with ALS in Northern California—way to go Morgan! Props to Dawn Butler Delaloye who sold the winning raffle ticket for the E-Bike!
|
|
Calling all people living with ALS and caregivers! Your perspectives are urgently needed! Your responses on the ALS Focus survey create action and influence ALS program and policy decisions!
ALS Focus is a survey platform that brings the perspectives of people with ALS and their caregivers to the forefront of research, care and advocacy. It only takes 10 minutes to participate, after registering, and all data collected will be open and free to the entire ALS community. The current survey focuses on your experiences with telehealth.
|
|
Eric 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
|
|
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
|
|
News E-Newsletters For The ALS Community
The ALS community is always moving forward. Stay up to date with the latest research and care news by signing up for our NEW monthly e-newsletters, Research Matters and Care Matters.
ALS researchers around the world are working tirelessly in the search for treatments and a cure. Research Matters will include the latest updates.
|
|
The ALS Association works to empower those impacted by ALS to live their lives to the fullest. Stay up to date with the latest news and stories about ALS care by subscribing to Care Matters |
|
PODCAST EPISODES
Continuing to Fight for Access to Promising Treatments
Recorded on May 27, 2021
Jeremy is joined by co-host Jessica Chapman to talk with Larry Falivena, a member of The ALS Association Board of Trustees and a speaker at the We Can’t Wait Action Meeting with the FDA.
|
|
Managing the Financial Impact of an ALS Diagnosis
Recorded on May 20, 2021
Jeremy talks to Brian Chappell, a wealth advisor and portfolio manager at UBS, to explore the devastating financial impact of an ALS diagnosis and some tips on navigating the expense.
|
|
Every Moment Matters
Recorded on May 13, 2021
Mike and Jeremy are joined by Sue Seabrook; a wife, a mom, a sister, and a caregiver for her mother living with ALS. Sue talks about the ways her family is embracing all the moments that matter in life
|
|
Engaging Kids in the Fight Against ALS
Recorded on May 6, 2021
Mike and Jeremy are joined by Rebecca Wetzel, an educator and philanthropist, who partnered with The ALS Association to launch the ALS Youth Challenge in 2019.
|
|
Webinar Learning Opportunities |
|
ALS Clinical Trial Pipeline
Mon, June 7, 2021
5:00 p.m. EST
|
|
The SLP ALS Augmentative Communication Evaluation
Mon, June 21, 2021
2:00 p.m. EST
|
|
Preclinical Development of Potential Therapies
Wed, June 23, 2021
3:30 p.m. EST
|
|
|
|
|
|
|
