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.
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.
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.
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.
Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS.
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.
My parents had been married less than two years when my dad was diagnosed. Of course, making a decision regarding whether or not to start a family was difficult at the time, but due to their faith and positive outlook, they chose to do so. Had they not shared the same optimism, my older brother John would not be here, and I would not be writing this today. To say that I am thankful for their decision is an understatement. My dad has had a long battle with ALS and is still fighting after 26 years.
We talked with Dr. Yuka Koike, postdoctoral fellow working under her mentor, Dr. Leonard Petrucelli in the Petrucelli lab at Mayo Clinic Jacksonville, to learn more about her and her ALS research focused on revealing how TDP-43 mediated RNA dysfunction contributes to ALS/FTD disease.
Steve realized he needed to turn to his faith to help him live with ALS. Steve assembled a team and got to work developing ALS Family of Faith, a new ministry designed to meet the needs of those looking for prayer and spiritual counseling during their journey with ALS.