Gayle Jacobs’ 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.
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.
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.
“My father’s life paralleled Lou Gehrig’s in a lot of ways. They both had humble beginnings and were hard-working, selfless men who thought of others first,” says Jeff Rowe. In 1988, Jeff’s father Frank lost his battle with ALS at 62 years young, just nine months after his diagnosis.
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.
Lindy Anne Lund passed away last year from ALS. She is the mother of Olympic gold medalist, Lindsey Vonn, as well as four other children who are spending their first Mother's Day without her. Lindy's daughter, Laura, discusses how the whole family was affected by their mother's ALS diagnosis from the beginning, middle and end.
We continue to press Cigna to reverse course and make Relyvrio treatment available for people living with ALS on Cigna plans. While Cigna initially revised its policy, those changes were insufficient to ensure timely access to Relyvrio for people living with ALS.