ALS doesn’t care where a person lives, and a person with ALS in Florence, Italy is as much in need of reliable care and resources as someone in Florence, South Carolina. At the International Alliance of ALS/MND Association meeting in late 2022, proud “Mapper” members Amanda Stanko, senior solution engineer at Esri, and Pat (who joined remotely) shared how they are taking their clinic mapping tool internationally to provide the resource for people with ALS around the world.
We spoke with Scott Kauffman, chairman of The ALS Association Board of Trustees and caregiver to his son, Stephen, who is living with ALS, to look back on the achievements made in 2022 and learn more about what he sees ahead in 2023.
More than 200 leaders from over 40 countries representing the International Alliance of ALS/MND Associations' many member associations came together, both in person and virtually, to share updates on the progress being made around the world in ALS care, support, technology, science and organizational development.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and inspiring stories from around the country, The ALS Association’s blog covered it all in 2022. Here is a quick look at the top ten posts our readers enjoyed most.
Across our mission, we saw amazing progress in the fight against ALS in 2022. When we come together as one team with one mission, we have an opportunity to change the world.
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.
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.
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.
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.
The recent ruling by the Supreme Court to overturn Roe v. Wade is a wakeup call for all of us who care about the rights of people being able to make decisions about their own healthcare. No matter your political perspective or leanings, any erosion of the rights for individuals and their loved ones to set the course for their own treatment in consultation with their medical professionals is of great concern.
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.
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.
For more than ten years, Donna has worked with The ALS Association Greater Philadelphia Chapter as Director of Development. She has also been a constant advocate, supporting the chapter’s ALS families through fundraising initiatives, and a caring, compassionate ally throughout their ALS journey. Hayley and Felicia joined Donna in her mission to help people impacted by ALS when they were young girls.
We recently caught up with Lindsay Litterini, volunteer and board member for The ALS Association Western Pennsylvania Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.
It is on us—those who have experienced this disease firsthand, those of us who are living with the disease, those who are serving as caregivers—to determine the value and quality of life with ALS. We need to stand up and object to discriminatory assessments that overlook the most important things that give life value.
The Institute of Clinical and Economic Review, commonly known as ICER, has opened a review of AMX0035 to determine the cost-effectiveness of the drug. The ALS Association is committed to making sure ICER’s review does not discriminate against people with ALS and that its analysis does not prevent people with ALS from accessing promising treatments.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.
The work detailed in this report covers the entirety of our mission to create a world without ALS, from expanding the research pipeline, to working to bring the best care possible to people living with ALS and their caregivers to fighting for increased federal funding for ALS research and public policies that improve the quality of life for people living with ALS.
Adequate nutrition helps maintain energy stores, supports a strong immune system, and reduces the risk of chronic diseases. But the demands of caregiving can put healthy meals on the backburner. Here are some tactics to simplify mealtimes while still eating healthy.
