The ALS Association is committed to doing whatever it takes to make ALS livable for everyone, everywhere. Providing information, resources and free support services are some of the ways we are working to make that a reality.
In this issue, we focus on multidisciplinary care, familial ALS, extending survival and the many resources available to the ALS community.
Of the more than 30,000 individuals living with ALS in the United States, approximately 5-10% have family members who have also been affected by the disease. This is often referred to as “familial ALS.”
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.
Studies have shown multidisciplinary ALS care can extend survival and improve quality of life for people with ALS by providing coordinated interprofessional care that seeks to address the complex needs of people living with the disease.
During the International Alliance of ALS/MND Association Meeting, ALS Association team members explained to a global audience how data is being used to provide increased access to multidisciplinary care for people with ALS all over the world.
A priority of the Association’s nationwide state policy and advocacy department is to optimize current treatments and care. By advocating for expanded support for care services at the state level, we can ensure that individuals with ALS have access to the support they need, regardless of where they live. Sign up to become an ALS advocate today!
In 2022, we shined a spotlight on the Woody family, providing a glimpse into their everyday life with ALS from many different perspectives. This year, we’ve invited Kristina Woody, spouse, mom, nurse and ALS caregiver, to continue sharing her family's experiences as their family journey continues.
To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.
The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care.
Our nationwide network of chapters and partners deliver a robust portfolio of care and support programs designed to enhance quality of life and support families impacted by ALS.
Support groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness.
We have assembled multiple resources, including publications and videos produced by the Association, and other related books, fact sheets and resource guides pertaining to ALS and ALS care.
For more information, visit our website at als.org.
Stay up to date with the latest ALS research news by signing up for our monthly e-newsletter, Research Matters.
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