Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.
November 1 marks the beginning of National Family Caregivers Month. There are many ways to help caregivers and families impacted by ALS. The ALS Association put together a list of ten ways to make a difference in the lives of family caregivers.
Reducing the financial burdens of ALS is part of our commitment to making ALS a livable disease until we can cure it for everyone. We are working hard to mitigate the economic impacts of ALS in a variety of ways. For complex financial or insurance issues, we sometimes turn to our partnership with the Patient Advocate Foundation (PAF).
For National Respiratory Care Week, The ALS Association has compiled a list of the wide variety of free, reliable information and resources for everyone affected by ALS.
Learn about the five bright, young researchers from prestigious academic institutions across the country who have been selected to join The ALS Association’s 2023 Class of Milton Safenowitz Postdoctoral Fellows.
We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.
Medicare open enrollment begins Sunday, October 15, the annual period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. After the open enrollment window closes on December 7, plan changes can only be made after a qualifying life event.
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.