When Jules and Maria started a podcast in 2019 to tell their story it wasn’t about ALS. But even though Jules’ ALS diagnosis in 2020 would change that, their story is still about so much more—including life, love, and even comedy.
In March 2022, after several months of multiple doctor visits and many tests, 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, as he shares his testimony with people from all over the world.
In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.
We are forever grateful for the many volunteers working with us to create a world without ALS. Volunteers like Mike Koehler in Kansas City, Missouri make a big impact. Mike leads the volunteers for all three of their Kansas City events, including a gala, a golf tournament and the Kansas City Walk to Defeat ALS®. He organizes the volunteers and acts as their main point of contact, managing and assigning tasks on the day of the events.
The Walk to Defeat ALS® is open to everyone, and fundraising is just one of many reasons people participate. We asked several members of the ALS community to share why they walk, and here’s what they had to say.
An avid skier, cyclist, and hiker, Father Jim has been a pastor at St. Michael’s Parish in Olympia, Washington for over twenty years. With members of the church community, he has traveled to numerous countries for both missionary work and recreational trips. A few years ago, he began having difficulties with muscle twitches, upper body weakness, and leg cramps. Before long he was diagnosed with ALS.
After my dad was diagnosed, there was no hesitation that our family was going to fight alongside him. So that meant it was time to volunteer with The ALS Association. We all knew right then and there that our volunteer work wasn’t going to save our father, but it was going to help others not feel the devastation we were feeling at the time of his diagnosis.
Stomp Out ALS is a third-party fundraiser hosted by Brandi Hyatt in memory of her father Jack who passed away in 2017. The event is centered around the Kentucky Derby - getting dressed up, wearing big hats, eating delicious Southern-themed food and baked goods, picking horses and other Derby-related activities.
Spring feels like it’s just around the corner for most of us, and that means ALS communities nationwide are preparing to kick off their 2022 Walk to Defeat ALS® events. And if the hard work and dedication we see each year from our incredible volunteers and families is any indication, it’s sure to be yet another amazing opportunity to join the fight for all those impacted by ALS.