Emergency Preparedness: Expect the Unexpected, When Living With ALS
Did you know June 1 marked the beginning of hurricane season? With increasing heat and summer storms arriving early, now is a good time to make sure you and your loved ones are prepared for what may come your way.
Nutritional Considerations in ALS
ALS presents its own set of nutritional challenges that must be addressed when considering what makes up a healthy diet, and these challenges change as the disease progresses. Here are some free resources available to help better manage these changes.
Palliative Care for ALS Survey Now Open
People living with ALS and their caregivers or past caregivers who have received palliative care are invited to take part in a research study about palliative care for ALS conducted at the University of California, San Francisco. Being in this study involves completing one ~15-minute online survey to share your perspectives on palliative care for ALS.
Join Us at ALS Nexus 2024
ALS Nexus brings together leaders in the ALS community to connect, collaborate, and change the future of ALS. This is more than a conference – it’s an opportunity to spark new ideas and accelerate progress towards our goal of making ALS a livable disease until we can cure it.
Here are some highlights of some of the planned discussions:
Raising Ice Buckets to Raise ALS Awareness
Nothing has brought more ALS awareness like the Ice Bucket Challenge during the summer of 2014. The viral sensation spanned the globe, forever changing the future and trajectory of ALS. And the awareness and funds generated by the social media phenomena put us on a path to end this disease.
Learn more about the impact the Challenge has had on the ALS community:
Help Drive Changes in ALS Research, Policy, and Care
ALS Focus is a survey program developed by and for people living with ALS and their caregivers. Through ALS Focus research, the ALS Association scientifically measures the preferences, needs and experiences of people living with ALS and ALS caregivers to promote change in ALS research, policy, and care. All participants must be at least 18 years old, live in the United States and be able to read and understand English.
By sharing their lived experiences, ALS Focus participants can make a real difference for the ALS community.
More information about ALS Focus and instructions for signing up can be found at ALSFocus.org.
Discover My ALS Journey™, an Interactive Tool to Help People Living with ALS
ALS follows no predictable path and adheres to no set timeline. Planning ahead helps to alleviate some of the chaos of change, but how do you know what to plan for or what questions to ask? My ALS Journey™ is an interactive, web-based tool that allows people living with ALS to take control of their journey with the disease.
Movement Matters: A Personalized Approach to Exercise and Fatigue Management in ALS
Monday, June 24, 2024 • 2:00 p.m. ET
Presented by Dr. Katherine M. Burke and Claire MacAdam, PT
Dr. Katherine M. Burke is a Board-Certified Clinical Specialist in Neurological Physical Therapy. She received her doctorate degree in physical therapy from the MGH Institute of Health Professions (MGHIHP) and is currently a first-year PhD student in Rehabilitation Sciences, specializing in measurement in ALS, at the MGHIHP.
Claire MacAdam, PT, NCS graduated from the University of South Alabama with a B.S. in Physical Therapy in 1982. She has been certified by the American Board of Physical Therapy Specialties in Neurologic Physical Therapy since 1994. She is a clinical and research physical therapist at the Healey & AMG Center for ALS at Massachusetts General Hospital in Boston, MA.
We also have a vast library of prerecorded webinars you might find interesting available HERE. Here are some examples you might find helpful:
- Voice Preservation: Voice Banking and Message Banking-What You Need to Know
- ALS Research Advances: Making Sense of Antisense Therapy
To view past webinars available in our archive, visit our website HERE.
- Walking for Wally
- Selina Lavonne Rambo and “Grandpa’s Wise Words”
- Matt Fleming: Determined to Make a Difference
- Shelby Kinsey: “I have ALS, ALS does not have me!”
- Living with ALS, "Right Here, Right Now"
- Association Leadership Takes Action on the Hill
To learn more about the disease and follow stories about people living with ALS in the community, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.
ALS Centers & Clinics
We collaborate with some of the best ALS physicians and clinics across the United States to help ensure people living with ALS have access to specialized care.
Local Support
Our nationwide network of care teams and partners provide people living with ALS and their family and loved ones with support in communities across the country.
Support Groups
Our ALS support groups are designed with one thing in mind enhancing quality of life and supporting families impacted by ALS regardless of where they live. Addressing the unique challenges the disease presents, they follow best practices and join people together who are dealing with similar difficult circumstances.
Programs
We're dedicated to providing you and your loved ones with the information, support and tools you need free of charge. Learn more about the care programs we offer both in your state and nationwide.
Publications
We have assembled multiple resources, including publications and videos produced by the Association, 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 news in ALS research by signing up for our monthly e-newsletter, Research Matters.
We welcome all feedback, comments and questions you may have on anything about the information provided, suggestions of topics you would like to see in future newsletters or thoughts to help us improve. Please email us at communications@als.org.
ALS Association
1300 Wilson Blvd., Suite 600
Arlington, VA, 22209
