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.
When Anjo Snijders was diagnosed with ALS in 2017 at the age of 35, he and his wife Sascha realized the vision of their future with their two young children in the Netherlands was forever changed. For both Anjo and Sascha, honesty with their children, age just seven and two at the time, was of great importance. Both teachers by trade, they began to look for resources to help explain their daddy’s illness, but found little if anything. And with that, the story of Luka and the Lights was born.
Jaci Haakonson has been a caregiver to her husband Ted for ten years now. They were "lucky" in many ways early in Ted's diagnosis, but living with ALS shouldn't be dependent upon luck.
ALS doesn’t care where a person lives, and a person with ALS in Florence, Italy is as much in need of reliable care and resources as someone in Florence, South Carolina. At the International Alliance of ALS/MND Association meeting in late 2022, proud “Mapper” members Amanda Stanko, senior solution engineer at Esri, and Pat (who joined remotely) shared how they are taking their clinic mapping tool internationally to provide the resource for people with ALS around the world.
Looking back on the beginning of 2022, I would have never anticipated telling my family’s story to so many with the help of The ALS Association. I was working two jobs as a nurse, transitioning to another clinical position, all while trying to support my husband Lamar (diagnosed with ALS in 2018) with his goals toward completing his college degree, and maintaining the busyness of motherhood, raising our 8-year-old daughter.
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.
The ALS Association has awarded more than $700,000 to support five promising early career scientists through its Milton Safenowitz Postdoctoral Fellowship Program. This program encourages a pipeline of ALS researchers and innovative ideas that can lead to better ALS treatments and care.
We spoke with Scott Kauffman, chairman of The ALS Association Board of Trustees and caregiver to his son, Stephen, who is living with ALS, to look back on the achievements made in 2022 and learn more about what he sees ahead in 2023.
The Marcia LaRiche Scholarship Fund can assist dependent sons and daughters of parents who have been diagnosed with Amyotrophic Lateral Sclerosis (ALS) living in northeast Ohio finance their education at a postsecondary institution of their choice.
More than 200 leaders from over 40 countries representing the International Alliance of ALS/MND Associations' many member associations came together, both in person and virtually, to share updates on the progress being made around the world in ALS care, support, technology, science and organizational development.
Stephen Hawking, the world-renowned British scientist, professor, and author, is regarded as one of the most brilliant theoretical physicists in history. But what Stephen was also well-known for was his extraordinary life living with ALS for more than 55 years. To celebrate what would have been his 81st birthday, one elementary school in Seattle is honoring his legacy by inspiring young readers to learn more about ALS while helping to fight the disease that took his life.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and inspiring stories from around the country, The ALS Association’s blog covered it all in 2022. Here is a quick look at the top ten posts our readers enjoyed most.
When I was diagnosed with ALS in 2018, my wife Kristina and I knew we were in for the fight of our lives. But I don’t think we were truly prepared for the devastating impact it would have on our family.
For a variety of reasons, many individuals experience dysphagia, or difficulty swallowing, and therefore require liquids or soft consistency foods to meet their nutrition requirements. In this booklet you will find a festive holiday menu designed for individuals with difficulty swallowing.
We spoke with Pam Knott, vice president of data and technology at The ALS Association, to learn more about how the Association is harnessing the power and potential of big data to speed up the process of empowering people to live longer lives, to access care, to bring new treatments to market, and to reduce the harmful impact associated with the disease.
Cole Thompson and Lamar Woody have been friends since the seventh grade, although Cole readily admits he had lost touch with his friend after college. Cole moved away from Auburn, Alabama, and life took him and Lamar in different directions. Then one day Cole saw a GoFundMe page someone had created for Lamar and his family after Lamar was diagnosed with ALS. “From there, Lamar and I started chatting again on Facebook, and rekindled our friendship,” Cole says.
Across our mission, we saw amazing progress in the fight against ALS in 2022. When we come together as one team with one mission, we have an opportunity to change the world.
The ALS Association’s nationwide network of local care teams work tirelessly with families to provide education, support and resources to help. One of those care team members is Melissa Enfinger, director of care services in Alabama, who works very closely with the Woody family in Auburn.
Holiday celebrations and traditions are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families.