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.
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.
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 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.
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.
The ALS Association has launched My ALS Journey™, a new interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Developed in consultation with the ALS community, My ALS Journey is designed to put individuals living with ALS in the driver’s seat of their own health care journey.
Gayle Jacobs’ journey with ALS started in 2017 when she was diagnosed at the age of 44. An optimistic and positive person by nature, she realized what an incredible network of support she had surrounding her with her family and friends, and she quickly set her sights on how she wanted to live her life with ALS.
For people with ALS, multidisciplinary care has been shown to extend survival and improve life quality. We are committed to expanding this network insuring people with ALS, regardless of where they live, have access to this type of critical care.
The FDA announced it has granted accelerated approval to tofersen, a treatment for people living with mutations of the SOD1 gene. This is a significant victory for the ALS community and our efforts to make ALS livable for everyone, everywhere, until we can cure it.
In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.
For people with ALS, an occupational therapist (or OT) is there to help them maintain their independence for as long as possible as well as to find ways to maintain their quality of life. April is Occupational Therapy Month, so what better time to explore the many, and varied, ways an OT can make a difference.
The YCare youth caregiving training program was developed to meet the needs of young caregivers who care for the adult in their life living with ALS. At the International Alliance of ALS/MND Association meeting in late 2022, the creators of the YCare program and a team of local experts presented on how they are translating the YCare program, in some cases quite literally, for use in South Africa.
In recognition of National Social Work Month, we are shining a spotlight on the many invaluable services a social worker provides for people with ALS and their families.
March is National Nutrition Month, and since maintaining proper nutrition is so important for people living with ALS, we wanted to highlight the critical role of one member of the ALS care team: the registered dietitian (RD).
In most people’s journey 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. We spoke with Craig Kloss and asked him to share his story about his personal experience with making this difficult decision, and the relief he and his family felt once they had made it.
For many people living with ALS, the decision to have a feeding tube placed, if or when it’s needed, is an important one, and as with many decisions that must be made during an ALS journey, it’s not of the one-size-fits-all variety. In recognition of Feeding Tube Awareness Week, we wanted to share some common concerns and misconceptions about them as well as some resources to help.
For people with ALS, having access to an ALS multidisciplinary care center has been proven to both extend survival and enhance the quality of life for the people that attend. Clinics are neatly plotted on our locator map, making them easier for people living with ALS and their families to find.
A key component to making ALS a livable disease is multidisciplinary care. Studies have shown this specialized ALS care can extend survival and improve patients’ quality of life by providing coordinated interprofessional care that seeks to address the complex needs of people living with the disease.
