Children and teens that see a parent, grandparent or other family member progress with ALS and experience death are not immune to the pain, anger, frustration and confusion that adults experience. Depending on their age and maturity level, their understanding and needs vary widely and it can be very challenging to know how best to help them.
I woke up this morning to the terrible news that Stephen Hawking died. While I never met the man, and didn’t really understand all he was saying about black holes, I learned a lot from him about what is possible for people with ALS.
Winners of the prestigious Sheila Essey Award have made significant contributions to all avenues of ALS research. The award is made possible through the generosity of the Essey Family Fund in memory of Sheila Essey, who battled ALS for 10 years and died from the disease in 2004.
The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS. The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.
Sydney’s father was diagnosed with ALS in April of 2017, but it did not stop him from living the rest of his life to the fullest and encouraging others to do the same. Sydney knew ALS could not take away her dad’s love of adventure, and she wanted to find a way to continue that love even when he no longer could. He passed away in 2018, but Sydney took on his bucket list as her own.
The ALS Association supports ACT for ALS and the Promising Pathway Act as they were originally introduced in the last Congress. Following the 2020 election, a new Congress was sworn-in in January of 2021. The legislative process requires that both bills be reintroduced to the newly elected Congress, and we are working with our congressional champions to reintroduce them as soon as possible. We believe both bills will make a positive impact on people living with ALS and look forward to working with the community and Congress to pass them.
This week the world turned their focus to the celebration of women and girls in science, shining a light on the tremendous gender gap that still exists in the world of science. We asked Jill Yersak, Ph.D., Vice President of Mission Strategy at The ALS Association about her personal experience growing up in the STEM field.
You can make a huge difference in the lives of people living with ALS. Whether locally or nationally, there are many ways for you to get involved and support our mission to end ALS. Learn more.
Before Brett’s ALS diagnosis, he was an electrician, an outdoorsman and a musician. His hands were his livelihood, creative outlet and unfortunately, the first part of his body to be affected by the disease.