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.
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 Luki and the Lights was born.
Jackie Heltz is a producer, filmmaker, and writer with a passion for issue-driven documentaries. She is also a dedicated volunteer in the fight against ALS.
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.
We recently talked with Bandon Staple, one of this year’s award recipients, to learn a little more about his connection to ALS, what receiving the scholarship means to him, and what his future plans are in healthcare.
We recently talked with Cierra Abbott, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and what her future plans are.
We recently talked with Hastings Moffitt, one of this year’s award recipients, to learn a little more about her connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.
We recently talked with Chandler Brestel, one of this year’s award recipients, to learn a little more about her connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.
The ALS Association is accepting applications for the Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.
March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information.
National Malnutrition Awareness Week kicks off today. The ALS Association has resources available to help make sure people living with ALS do not struggle with malnutrition as the disease progresses.
The ALS Association has awarded $225,000 in scholarships to 45 inaugural recipients of the Jane Calmes ALS Scholarship Fund. The Fund provides financial support to students impacted by ALS.
Even though ALS is a disease that has its own health implications, people with ALS are not immune from other injuries or medical issues. Individuals with ALS can still get sick or hurt themselves in ways unrelated to the disease. Or, people with ALS might have complications directly related to the disease that warrants a visit to the hospital.
ALS can be confusing, scary, embarrassing, and overwhelming – for people living with the disease as well as for the youth within their families. Young people need age-appropriate details about ALS to help reduce some of the fear and uncertainty surrounding the disease.
Carmen Schentrup had a dream: a world without ALS. Her career aspiration was to become a medical researcher and to be part of The ALS Association’s work to cure ALS. Tragically, Carmen’s life was cut short in the horrific Parkland shooting. However, her dream to contribute to a cure is being realized in a significant way.
When Dr. Timothy Miller and his colleagues from Washington University in St. Louis published preclinical data in The Journal of Clinical Investigation last month, showing how second-generation antisense drugs were effective in ALS mouse and rat models, it served as a vivid reminder that every research investment and discovery adds up.
Our beloved daughter, Carmen Schentrup, was taken from us on February 14, one of 17 victims of the mass shooting at Marjory Stoneman Douglas High School in Parkland, Fla. Her life was cut too short. For the last month, we have tried to make sense of the senseless, and we have grieved with the other families.
In general, people with disabilities are traveling more than ever, including those living with ALS. In response, the travel industry is paying greater attention to their special needs by providing more services and accommodations.
The ALS Association has worked on developing and implementing new educational tools to meet the needs and requests of our community. We are pleased to announce and highlight two of our newest projects - our resource guide series translated into Spanish and the Key Medical Information App - which are now available.
