My first experience learning about ALS (Amyotrophic lateral sclerosis), also called Lou Gehrig’s Disease was years ago in a novel. There I read a very graphic description of what this disease does to a person, how it gradually attacks certain cells in the brain and spinal cord needed to keep our muscles moving. Even though it was fiction, it made a deep impression on me. Even today, that novel inspires me to help end ALS.
Meeting Augie Nieto
Flash forward a few years to my first experience at IHRSA, in 2008. There I had the opportunity to meet Augie Nieto, the founder of Life Fitness. Augie was a big name in the fitness and wellness industry when he was diagnosed with ALS in 2005. He is already a medical miracle, having survived this dreaded disease for 12 years. Most people live an average of 2-5 years after diagnosis.
Back then there was very little information or research for ALS, so Augie started Augie’s Quest. We call Augie the “Inspiration Officer” for Augie’s Quest and he is also Chairman of the Board for the ALS Therapy Development Institute (ALS TDI).
ALS Therapy Development Institute
As the world’s first and largest nonprofit biotech focused 100 percent on ALS, ALS TDI’s innovative science and cutting-edge approach has resulted in, among other things, the identification of a promising treatment for ALS, AT-1501. There is no cure yet, but as Augie and the ALS TDI team say, “ALS is not an incurable disease; it is an underfunded one.”
What Would You Give to Help End ALS?
The What Would You Give campaign was launched in 2015 by a young mother, Sara Coglianese, after she was diagnosed with ALS at the age of 33 when her daughter Scarlett was only two years old. She is challenging people to give up an ability, like the use of their legs, arms, or hands, so that they will understand what life with ALS is like. She told her story in this article on CNN, and explains how ALS changed her own and her daughter’s life.
The goal of this campaign is to raise $50,000. Plus, a very generous anonymous donor will match that dollar for dollar up to $25,000! We can work together to help make this horrible disease a thing of the past! Every donation, small or large, helps. Do it for Sara and Scarlett, for Augie, for anyone in your family who has had to face this diagnosis. Donate here.
You can also help by sharing this post and spreading the word. Together let’s help stop ALS.
I was not compensated in any way for writing this post. I feel it is one way that I can help end ALS.
So here’s my question: What would you give to end ALS?
My weekly linkups! Please stop by and check out all of the great recipes, workouts, and information that all these awesome bloggers share every week!
Meatless Monday with Sarah and Deborah
Meatless Monday with Annmarie and Dixya
Tuesdays on the Run with Marcia, Erika, and Patty
Inspire Me Monday with Janice
Wild Workout Wednesday with Annmarie, Jen, and Nicole
The Plant-Based Potluck Party with Deborah
The Running Coaches’ Corner with Rachel, Suz, Lora Marie, and Me!
Friday 5 2.0 with Rachel and Lacey and Meranda