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.
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.
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.
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.
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 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.
In August, ALS advocates across the country will be meeting with members of Congress in their home district offices, pressing for public policies that will make ALS livable while accelerating the search for new treatments and ways to cure the disease. Learn more about Advocacy Action Month and how you can get involved to help the ALS community.
We spoke with Kara Nett Hinkley, national vice president of state policy at The ALS Association and member of the National Association of Insurance Commissioners' Consumer Advisory Board, to discuss some of the important work being done to break down barriers to accessing health care.
Accessing insurance coverage for durable medical equipment is critical for people with ALS. However, too many private insurers either refuse to cover or set up insurmountable barriers for patients who desperately need access to the equipment they need to survive. Learn from people living with ALS and their families around the country who are facing these difficult challenges every day.
We are excited to share our 2023 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.
For people living with ALS and their families, working with health insurance providers at all stages of the disease is a necessity to obtain the critical care and services they need. The ALS Association, local ALS care teams, and ALS multidisciplinary clinics can all be helpful in getting access to the care and equipment needed for people with ALS to live their lives as they choose.