The ALS Association spent over $2 million helping fund the development and clinical trial of AMX0035. When the results of that trial showed it was safe and effective in treating ALS, the ALS Association led an advocacy campaign to push the FDA to approve the drug. After two years of advocacy, the FDA finally approved AMX0035.
Most songwriters will tell you, the key to a really good song is the lyrics, a story being told with unique chords and melodies, evoking a specific emotion and compelling listeners to connect and share. No one knows this better than the Swope family, sharing their beautiful memories and storytelling through music, rhythm and song.
We recently talked with Ashley Wong, one of the 2022 scholarship recipients, to learn more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in healthcare.
As ALS progresses, the challenges of maintaining good nutrition as well as avoiding malnutrition change. With the support of caregivers and a multidisciplinary care team, these challenges can be managed to provide both the best nutrition and best quality of life at all stages.
We recently talked with Liam Rudin, one of the 2022 The Jane Calmes ALS Scholarship recipients, to learn more about his connection to ALS, what receiving the scholarship means to him, and his future plans studying accounting.
Matt Miller might just be the most shameless member of ‘Team Finlay,’ having spent the last 10 years taking outlandish dares from family and friends to raise money for his cousin Jack. From sleeping on roofs to participating in water aerobics dressed like Jane Fonda, there is nothing Matt won’t do to help fight ALS.
We recently talked with Veronica Darland, one of the 2022 Jane Calmes ALS Scholarship recipients, to learn more about her connection to ALS, what receiving the scholarship means to her, and her future plans in journalism.
Jackie could have been the The ALS Association Greater Philadelphia Chapter's volunteer of the month years before her mother's ALS diagnosis. Ironically, in 2013, her dedication to the ALS mission took on an entirely new meaning for her.
We recently talked with Garrett Sakomizu, one of the 2022 recipients of The Jane Calmes ALS Scholarship, to learn a little more about his connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare and ALS research.
We talked with Dr. John Kalambogias, postdoctoral fellow from Columbia University, to learn more about his research focused on dysfunction and degeneration of corticospinal tract neurons in ALS mouse models.
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.
The urge to support, or be supported, is often accentuated at times of great challenge, or uncertainty. As anyone living with ALS or being an ALS caregiver knows, this disease can bring plenty of both. That’s why The ALS Association provides support groups in every state.
Pat was a former solutions team lead at Esri, a geographic information system (GIS) company, and spent his 25-year career in GIS creatively using mapping technology to solve real-world problems in the utility industry. Forced to retire in 2018 due to the progression of his disease, he had no idea where his passion for mapping and data would take him. “After my diagnosis, I wanted to bring GIS to the ALS battle, but wasn’t sure where to start,” says Pat.
In some way, shape or form, we are all list people. Some people are of the pen and paper list variety, others have taken to keeping notes on their phone or online calendar. And even those who would claim to not keep lists probably have an idea of some “to dos” they keep in their head. For ALS caregivers, far too often the last thing on their lists is themselves. So, here’s a list of ALS caregiver “to dos” for their own self-care and wellness.
We discussed the incredible strides being made in the science of preventing ALS with Dr. Stephen Goutman, Director of the Pranger ALS Clinic and Associate Professor of Neurology at the University of Michigan.
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.
We spoke with Dr. Melinda Kavanaugh, clinical social worker and associate professor at the University of Wisconsin-Milwaukee, to understand more about young caregivers and the potential harms caused by the lack of quality of sleep they receive and what can we do about it.
Jack Finlay was just 22 years old when he was diagnosed with ALS in 2010. Working toward his degree at the University of Montana, he vowed to not let the disease get in the way of achieving his dreams and living his best life.
We are pleased to share our 2022 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year, touching on all aspects of our mission: research, care services and advocacy.