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?
An independent research organization reported that donations from the 2014 ALS Ice Bucket Challenge enabled The ALS Association to increase its annual funding for research around the world by 187 percent. During this time, ALS researchers made scientific advances, care for people living with ALS expanded and investment in disease research from the federal government grew.
Our Mom had a natural determination in her that she developed at a very young age. She had a tough childhood that included losing her Mother prior to the age of 10, then living part-time with a Father who was stressfully dealing with raising Five Daughters and a young Son. With the guidance of her Sisters and Brother, along with living with Aunt Dot and Uncle Bernard, she was determined to take the negatives that life had thrown at her during her youth and turn them into positive situations.
Maureen Stemmelen was diagnosed with ALS in 2016. She has always been known as "the Gatherer", bringing friends, family and community in with open arms and an open heart. Her ALS journey has only served to affirm this, and she encourages everyone to lean in, let your friends, family and neighbors surround you - caregivers are your lifeline.
Maggie Broeren and Michael Coffey hosted a virtual discussion for the Wisconsin Chapter this past April where they introduced some ideas around death and dying that prompted a deeper discussion. This article touches on some of the key points of those conversations and some take aways from the experience.
Like most grandparents, Lesley Krummel took great joy in picking up her grandkids. And that loss is one of the most challenging aspects of her ALS progression.
Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life.
The Association is pleased to continue on the tradition of supporting bright, young scientists in ALS research through the Milton Safenowitz Postdoctoral Fellowship Program. This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. In this series, we highlight the dedication and unique contribution each fellow makes to ALS research. Today, we feature Dr. Sergey Stavisky from Stanford University.
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.