The FDA advisory committee vote on tofersen Wednesday was an exciting and critical moment in the ALS community’s efforts to find new treatments and cures. The committee voted unanimously to recommend accelerated approval of the new treatment.
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.
Larry Falivena, member of The ALS Association’s Board of Trustees who is living with ALS, shares his unique experience with the disease and his perspective on genetic testing.
With the emergence of gene-targeted therapies, knowing whether your ALS has an underlying genetic cause is becoming more important. Research has shown that about two-thirds of people with familial ALS and about 10% of people with sporadic ALS (no family history) have a mutation (or change) in at least one of the more than 40 genes that have been linked to the disease.
The ALS Association established a nationwide state policy and advocacy department committed to empowering people living with ALS and their families to fight for better public policies in their community.
The Walk to Defeat ALS® is open to everyone, and fundraising is just one of many reasons people participate. We asked several members of the ALS community to share why they walk, and here’s what they had to say.
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).
We spoke with Kara Nett Hinkley, vice president of state policy at The ALS Association to learn more about the role that state advocacy can play in the fight against ALS.
Fundraising through the Walk to Defeat ALS drives bold and urgent innovation as we march together toward a treatment that makes ALS livable for everyone, everywhere – until we find a cure.
In recognition of Rare Disease Day, Kristina Woody shares more about what it’s like to be a caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
When I was about 8 years old, I asked my mother about my grandmother, and she shared her mom died when she was 10 years old from “paralysis.” What my mother never knew was that I was afraid when I turned 10 years old, she would die of “paralysis,” just like her mom. Little did I know a mere 10 years later that fear would come true. And that is the beginning of my journey in life with the beast known as ALS.
In most cases, a person with a mutation in an ALS-linked gene usually has a 50-50 chance of passing it on to their children. But just because someone inherits an ALS-linked gene, it does not automatically mean they will develop the disease, and family members who develop ALS may have different disease experiences.
For people living with ALS, the enjoyment and escape video games may have once brought is far too often another thing the disease takes from them. As muscles weaken and fine motor functions decrease, handling video game controllers and keeping up with fast-paced game play can cause frustration and cause people to give up on gaming all together.
Jared Salomon lost his father to ALS in October of 2020 when he was just 29 and planning his engagement to his now beautiful wife, Maryn. While his father was not around to physically attend his wedding, he was there in spirit and left an amazing gift for his family and friends; a memory that will live on and be cherished forever.
Dr. Anuradhika Puri is a postdoctoral research associate at Washington University in St. Louis. We talked with her to learn more about her ALS research, as well as her interests outside the lab.
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.
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.