Each year on February 11, the world celebrates International Day of Women and Girls in Science Day. This year we’re shining a spotlight on Dr. Allison Ebert, Ph.D., Leadership Team Member at The ALS Association Wisconsin Chapter & professor at the Medical College of Wisconsin. Dr. Ebert breaks down the challenges of finding effective therapies for people living with ALS and the important work happening in her lab.
The National Institute of Neurological Disorders and Stroke (NINDS) issued a request for input recently to help guide its work supporting ALS research. The ALS Association is submitting input telling the agency that speed matters. We are encouraging NINDS and the rest of NIH to focus to find ways to use research to advance the health of people with ALS as quickly as possible.
In most people’s journey living with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty.
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.
Leadership Team Member & Professor at the Medical College of Wisconsin, Dr. Ebert breaks down the challenges of finding effective therapies for ALS and how you can support the important work happening in her lab.
Mark Kandel began experiencing indicator symptoms of ALS in 2011; falling, difficulty walking, loss of balance, spasticity in his right leg, and foot drop. In October of 2014, at age 59, he received his ALS Diagnosis at Mayo Clinic in Rochester, MN.
Mark is now "66 years young" and attends the Froedtert Clinic working with Dr. Dominic Fee. Despite the abilities he’s lost, Mark’s focus is on the present and what he is still able to do to "keep fighting."
Despite all that ALS has taken from me, I still try to maintain a positive attitude and try to enjoy each day. I have much to be thankful for. Instead of dwelling on things I can no longer do, I try to focus my time and energy on things I can still do.
The Marcia LaRiche Scholarship Fund can assist dependent sons and daughters of parents who have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) living in northeast Ohio finance their education at a postsecondary institution of their choice.
We recently spoke with Joan and Tony Nolting about their personal experience living with ALS and attending an ALS Association Certified Center of Excellence. After experiencing mild breathing symptoms and slurred speech, Tony was diagnosed with bulbar onset ALS in September of 2020, just five days after his 63rd birthday.
Each member of the team at an ALS multidisciplinary clinic plays an important role in delivering critical care for people living with ALS and their families. Association-wide liaisons work closely with ALS clinics nationwide, ensuring each patient’s unique needs and wishes are being addressed throughout their journey living with ALS. We recently spoke with Suzanne Schrag, senior director of care services for The ALS Association Rocky Mountain Chapter, and clinic liaison to ALS multidisciplinary clinics across Colorado and Utah.
Since high school, twenty-two-year-old Wil Armstrong dreamed of cycling across the country. After witnessing the impact of ALS on Rodney Lapp, his former mentor and high school basketball coach, Wil found his purpose to make this dream a reality.
The American Academy of Neurology ALS quality measures provide guidance and recommendations to health care providers, to ensure the most current information is available to provide the highest standard of care for individuals living with ALS. AAN has published draft updates to the ALS Quality Measurement Set and is now accepting public comments to help inform the final updates.
While there are many moving parts within an ALS multidisciplinary clinic, each team member plays an important role in delivering critical care for people living with ALS and their families. The leader of the team is the medical director, providing the professional guidance and support necessary to meet the unique needs of each patient throughout their journey living with ALS.
The multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline they need during a single visit. The ALS Association collaborates with experienced ALS clinicians across the country to help ensure people living with ALS have access to this type of specialized care.