Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, believes someday we’ll see a world free of ALS/MND. She also believes we won’t see that day unless we stay committed to working together—everywhere—to make it happen. "We'll never solve ALS until we include the whole world,” she says. “A strong partnership among all organizations dedicated to fighting ALS can move the needle on finding a cure and in making ALS livable."
In order to make ALS a livable disease and ultimately find a cure, we need to increase the number of clinical trials and make it easier for more people to participate in those trials. No one knows this better than Dr. Merit Cudkowicz, Director of the Sean M. Healey & AMG Center for ALS and Chief of Neurology at Massachusetts General Hospital.
ALS is a very different disease. Therefore physical therapy treatment has to be different than what you would consider typical physical therapy. You can't fight it off or beat it with exercising. In fact, the wrong kind of exercising can actually make things worse.
Dr. Tawfiq Al-Lahham is a neurologist with a subspeciality in neuromuscular medicine. We discuss with Dr. Al-Lahham how expanding multidisciplinary care is helping to make ALS a livable disease for everyone, everywhere until a cure is found.
This week is Malnutrition Awareness Week, an opportunity to remind everyone of the role proper nutrition plays in a person’s health and the importance of early detection, intervention and treatment of malnutrition for people living with ALS and their caregivers.
Gerald McCormick, a Gulf War veteran and former state legislator, used his connections and experience to join The ALS Association team of advocates and share his story.
Dr. Agessandro Abrahao, a professor of neurology at the University of Toronto and a neurologist at Sunnybrook Health Sciences Center, spoke about a new partnership between The ALS Association and the Focus Ultrasound Foundation and his work as a focused ultrasound investigator at the Harquail Centre for Neuromodulation.
We talked with including Dr. Kevin Rhine, a postdoctoral scholar at the University California San Diego, to learn more about his research, as well as his interests outside the lab.
There can be no doubt this time of year means “back to school” to so many families around the country. As students return back to campus, this year, we wanted to take the opportunity to introduce you to some of this year’s recipients of the 2023 Jane Calmes Scholarship Fund.
The ALS Association sent formal responses to Blue Cross Blue Shield of Illinois, New Mexico, Texas, Oklahoma, and Montana challenging their draft policies regarding coverage of Qalsody, approved by the FDA earlier this year for treatment of people living with ALS caused by the SOD1 gene mutation.
As you may have heard, we are going through a period of transition and I just want to take a moment to explain what is happening. Most of you want to know that we will continue to provide high-quality care services, state and national advocacy, and global ALS research. Let me reassure you -- we will. In fact, we will now better be able to do those things -- for everyone, everywhere.
As ALS progresses, the ability to participate by playing and creating music can become more challenging with the loss of motor function. But that doesn’t mean the ability to create music, and the ability to collaborate with others around music is entirely gone. Enter DuoRhythmo.
We talked with Dr. Caiwei Guo, a postdoctoral fellow at the Stanford University School of Medicine, to learn more about her research, as well as her interests outside the lab.
After retiring from a 50-year career in computer technology in 2015, Ken Baltes was finally able to follow his creative interests and focus on his passion for the arts. After he was diagnosed with ALS in 2020, he made it his goal to bring his love of the arts to others who are living with ALS.
Diagnosed with ALS in March 2022 at the age of 33, Brooke Eby is using her innate sense of humor and positive outlook on life to help raise awareness and funding for ALS research.
Melissa Enfinger, a care services director for The ALS Association based in Alabama, knows the importance of mental health when dealing with ALS. Melissa recently joined us on a Connecting ALS podcast episode to help us better understand the role wellness plays in making ALS livable and improving a person’s quality of life and share information about a mental health networking program she is spearheading to help the ALS community.
We talked with Dr. Jayakrishna Shenoy, a postdoctoral research associate at Brown University, to learn more about his research, as well as his interests outside the lab.
Focusing on caring for a person’s overall wellness is an important part of ALS multidisciplinary care. For people living with ALS and their families, the disease impacts every aspect of life, not just physical wellness, but also emotional, spiritual, social and financial wellness too.
August is National Wellness Month. Making a concerted effort to keep your mind healthy is just as important as keeping your body healthy, particularly for people living with ALS and their caregivers.
August is ALS Advocacy Action Month, an opportunity for you to join with other advocates in your own home state and push for changes in policies that affect the lives of people with ALS. Throughout this month, advocates will share their personal experience with ALS and urge members of Congress to increase funding of critical research to find new treatments and a cure.