As ALS Awareness Month 2023 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!
Jessy Ybarra’s journey with ALS began in 2015, at the age of 51. Like most he struggled with this 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.
It's ALS Awareness Month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches. To kick off the month, we’re highlighting eight easy ways you can get involved and help raise awareness of ALS, this month, and beyond.
Earlier this year Scott Kauffman, a business executive and long-time leader in the fight against ALS, began his tenure as chairman of The ALS Association Board of Trustees. We recently caught up with Scott on Connecting ALS, where he talked about his connection to the disease, raising awareness and his vision for creating a world without ALS.
In order to make ALS a livable disease and ultimately find a cure, it’s going to take people living with ALS, their caregivers, family members and loved ones across the country coming together to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease. In the past 12 months, ALS advocates have seen a number of public policy wins.
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.
Diagnosed with ALS last spring, Heidi Tarr Henson, Ed.D., shares thoughts about her personal journey living with the disease and what real awareness of ALS means to her.
I have been very fortunate and extremely unlucky in my life. I have bulbar-onset ALS. Of course, living with this “new normal” is challenging. But my previous experience with grief has informed my attitude now as well, and I try to live each day as best I can, in the most positive way possible.
In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.
May is ALS Awareness Month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches. To kick off the month of May, we’re highlighting eight easy ways you can help raise awareness this month and beyond.