Over the past month, we’ve shared many stories of how ALS impacts our community and how these determined individuals and families are fighting back. As ALS Awareness Month comes to a close, we wanted to take time to reflect, look back on the people we’ve met, celebrate the ongoing wins in the community and thank you for sharing, listening and growing this movement!

We've shared inspiring stories from families who every day are living their best lives with ALS while advocating and fighting for the community.

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• Jacob Harper: Fighting Genetic ALS Every Day – In March 2022, Jacob Harper was diagnosed with P525L FUS ALS—a nano-rare version of ALS only found in people under the age of 25. Jacob is on the Jacifusen clinical trial trying to slow progression, and he shares his testimony with people from all over the world.

   

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• Jessy Ybarra: Living His Best Life with ALS – Jessy’s journey with ALS began in 2015, at the age of 51. Like most he struggled with his diagnosis at first. Then he realized that while he couldn't control his ALS, he could take control of his LIFE with ALS, so he created what he calls his ‘aliveness list'—a future he could live INTO.

   

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• Gayle Jacobs: Living Her Best Life with ALS – Gayle’s journey with ALS started in 2017 when she was diagnosed at the age of 44. An optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her with her family and friends, and she quickly set her sights on how she wanted to live her life with ALS.
   
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• Our ALS Journey – Lindy Anne Lund passed away last year from ALS. Mother of Olympic gold medalist, Lindsey Vonn and four siblings, her daughter Laura shared their family’s personal journey with their mother from the beginning, middle, and end.
    Throughout the month, we've also shared the latest updates across our mission including the most recent developments in ALS research, the power of state and local advocacy, and the importance multidisciplinary care.
• Celebrating the Successes of ALS Research Today, While Working to Fund More for the Future – The FDA approval of Relyvrio (AMX0035) in 2022 and Qalsody (tofersen) last month are significant steps in the effort to make ALS a livable disease. As we celebrate the success of these long-term investments, we continue to fund the next generation of possible treatments, as well as the researchers that are searching for them.

UPDATE – APRIL 2024: Relyvrio was voluntarily withdrawn from the market by Amylyx following a phase 3 trial that failed to show it was effective. The ALS Association stands by its decision to push for early approval of Relyvrio given the promising phase 2 trial data and the safety of the treatment. At the time, we said that if it turns out to be ineffective, at worst, people living with ALS would have taken an ineffective therapy without risk of harm. If it was indeed effective, delaying access would have meant that people living with ALS would have lost two years of being able to take a life-extending therapy. In the interests of transparency and education, we are leaving this information up for future reference. People living with ALS need life-saving treatments and we are working as urgently as possible to advance the many more potential treatments in clinical trials.

• ALS Advocates: Making Their Voices Heard Across the Nation – It is always gratifying when hard work pays off, and for the ALS community, there have been many policy wins to celebrate recently. These successes are the direct result of the efforts of more than 40,000 ALS advocates across the country, working tirelessly with The ALS Association to make an impact for people living with the disease.
• Quality Local Care Critical for the ALS Community – For people with ALS, multidisciplinary care has been shown to extend survival and improve life quality. We are committed to expanding this network insuring people with ALS, regardless of where they live, have access to this type of critical care.

And finally, we've shared the launch of an incredible new interactive tool, My ALS Journey™, to help people living with ALS access the information and resources they so desperately need.

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• My ALS Journey™: Changing the Way People Live with ALS – Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.

ALS Awareness Month may be ending, but there is still much more work to be done. Let’s continue the incredible momentum we’ve gained this month! Discover the many ways to get involved, from becoming an ALS advocate, to volunteering in your community and continuing to spread awareness of this terrible disease until ALS is livable for everyone, everywhere, until we find a cure.

Learn more about ALS and how you can get involved to help people impacted by the disease.

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To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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