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We Can’t Wait to Walk to Defeat ALS® — So We’re Going Virtual
Just as ALS did not stop for COVID-19, the Walk to Defeat ALS® did not stop. The simple fact is, we can’t wait for COVID-19 to end before we walk. Instead, chapters across the country have been coming up with innovative ways to move this signature event into virtual spaces, creating new opportunities for our communities to come together in unity to keep building a world without ALS.
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Everyone Can Make a Difference in the Fight Against ALS
Meet Connor Way. Connor is your typical 8-year-old boy: he loves to play outside with his friends, go to school, and spend time with his family, especially his grandfather he calls “Papa.” But there’s something different about Connor’s story, his “Papa” had ALS.
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Mother’s Day Q&A with Carianne Meystrik
Carianne Meystrik has been living with ALS for 22 years – all while raising 4 children. In honor of Mother’s Day, we reached out to Carianne to check in on her ALS journey and her family, and to get her reflections on the impact ALS has had on motherhood.
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“You Find an Inner Strength that You Never Knew You Had.”: Troy Fields on Living With ALS
Before he was diagnosed with ALS in June 2018, Troy Fields was a hardworking businessman, devoted husband, and father. He had a job that he loved as a manager for a multinational company with responsibilities in Latin America. He traveled a lot, and when he wasn’t working, he was spending quality time with his family. But in 2017, he started to sense something was physically wrong.
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“Hope is in Enough of the People Being Concerned Enough to do Something about it.”: Bob Palucki on Living With ALS
Until he was diagnosed, Bob Palucki didn’t really know anything about ALS. “It really didn’t affect anybody in my family,” he says. “We’ve come so far in all the different medicines for all the different diseases and to think that we’ve got a disease as terrible as this and there’s no cure for it, there’s not even anything that can stop it from progressing.”
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Results from Our ALS Community Survey
The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements.
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What People With ALS Want You to Know About ALS
We launched the Challenge Me campaign last week. Challenge Me picks up where the ALS Ice Bucket Challenge left off. This time, we are challenging the world to do anything and everything they can to help end ALS.
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New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education
The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS. The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.
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Challenging Youth to Join the Fight
The ALS Association is launching a campaign to engage kids and teenagers in the fight against ALS, issuing the ALS Youth Challenge and celebrating the first-ever ALS Youth Action Day. Our chapters across the country will be partnering with youth organizations in their communities to identify future activists and philanthropists who will help to defeat ALS by accepting the ALS Youth Challenge.
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Guest Post: ALS Can Not Take Away My LOVE
This is the third in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Nanci Ryder, a renowned Hollywood publicist and co-founder of BWR Public Relations, was diagnosed with ALS in 2014. Since then, she has worked tirelessly to raise public awareness about ALS, and to advance the search for effective treatments and cures for ALS, with the help of her many friends and supporters. Along with her family and friends, like Renée Zellweger and Courteney Cox, she has participated in the Los Angeles County Walk to Defeat ALS as “Team Nanci”, raising over $690,000 in support of the ALS community.
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A Sad Update About Our #VoiceYourLove Ambassador, Ryan Farnsworth
It is with heavy hearts that we share the news that Ryan Farnsworth, whose story is featured as a part of our #VoiceYourLove campaign, died yesterday evening surrounded by his family. Ryan was diagnosed with ALS in January 2015, at the age of 29. As active ambassadors of The ALS Association’s mission and vision, Ryan and his family selflessly moved us closer to our vision to create a world without ALS.
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