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.

Gary Trosper was a transportation executive before he was diagnosed with ALS in 2015. After two years, he was forced to retire due to his symptoms, but he knew he didn’t want to just sit around: he wanted to make a difference. Acting as an advocate and taking action for himself and others is very important to him.

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.

Stay-at-home orders in response to the COVID-19 pandemic have upended many aspects of life, not least of which is volunteerism. And while the number of people volunteering has been declining in recent years, those who do volunteer are finding unique ways to stay engaged despite the coronavirus.

National Volunteer Week kicks off today. The weeklong celebration of volunteers began in 1974 and honors the people who come together and volunteer their time and resources to solve some of the world’s greatest problems.

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.”

With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access?

When the Biology Honors class kicked off a special course to learn more about neurological diseases, they turned it into a unified effort to educate their community and raise over $3,000 for ALS research. The ALS Association spoke to some of the folks behind the project.

The ALS Association has published community guidelines for our social media channels. We review and update them regularly to stay current with best practices and the expressed wishes of our community.

On Monday, the Food & Drug Administration (FDA) issued a finalized ALS Drug Development Guidance for Industry. This is one important step in comprehensive efforts to bring therapies to people with ALS more quickly. Five years ago, there was no clarity around what the FDA expected from companies pursuing ALS treatments. The ALS Association recognized this problem, galvanized the broader community, and engaged the FDA to provide a clear roadmap that also can respond to new science as it emerges. The FDA Guidance is one part of a commitment that will not be complete until we have a cure for all people with ALS.

The ALS Association has awarded $225,000 in scholarships to 45 inaugural recipients of the Jane Calmes ALS Scholarship Fund. The Fund provides financial support to students impacted by ALS.

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.

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.

The impact of an ALS diagnosis is profound – and not just for the person living with the disease. Daily activities, like making meals, doing laundry, mowing the lawn, and walking the dog, take a back seat when providing care for a family member with ALS.

Last week, Pete Frates and Pat Quinn unveiled a new campaign – Challenge Me -- to celebrate the fifth anniversary of the ALS Ice Bucket Challenge and reengage the millions around the world who took the Challenge. Pat and Pete brought the Challenge Me ethos to life with the Ice Bucket Challenge and they have continued to inspire the entire ALS community over the last five years.

Five years ago, we challenged our friends and family to dump buckets full of ice over their heads to raise awareness and funds for ALS. The rest is history. This year, we have a new message: Challenge Me.

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.

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.

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.

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.