Who Do We Support ... ALS TDI
Who Is ALS TDI
The ALS Therapy Development Institute (ALS TDI) is the world's foremost drug discovery lab focused solely on ALS. As a nonprofit biotech, we operate without regard for profit or politics.
Led by drug development experts and people with ALS, our Watertown, Massachusetts based lab is funded by a global network of supporters unified to end ALS. Our mission is to discover and develop effective treatments for ALS.
Who Do We Support ... The Blazeman Foundation
Who Was The Blazeman? Jon The "Blazeman" Blais
Born and raised in southern New England, Jonathan S. Blais had always been an elite athlete and multi-sport competitor. Given a death sentence in the form of Amyotrophic Lateral Sclerosis (more commonly known as Lou Gehrig’s disease) in May of 2005, at the age of 33, Jon accepted his diagnosis and decided to do incredible things with it. He began waging a War on ALS® from the beginning. This was his way of dealing with it; this is how he lived out his days… fighting for research and raising awareness.
A decade prior to his diagnosis, Jon decided to move from his home in Seekonk, Massachusetts to San Diego to finish school and eventually get his Master’s degree in teaching. Focusing his energy on helping kids who were emotionally challenged and learning-disabled, Jon became a teacher at the Aseltine School. This is also where he became better known as “The Blazeman.” Jon did amazing work with the Aseltine kids. Through summer recreation programs and outdoor activities, his students learned to overcome obstacles and become stronger through hard work and determination. When Jon was told he had ALS, and subsequently only 2-5 years to live, he left the life he’d built, and the many he’d touched behind, and headed back east. In a poignant moment, once caught on film, Jon’s dad Bob, was quoted as telling his son, “You’re coming home to live, not die.”
Competing in triathlons for 20 years, Jon always wanted to compete in an Ironman – especially in Hawaii. On October 15, 2005, only 5 months after being diagnosed, Jon became the only individual with ALS to complete an Ironman, finishing in 16:28:56. He crossed the finish line by log-rolling over it, and since then, the “log roll” has been graciously performed by countless athletes as a symbol of hope, and more importantly, as a means of raising awareness for ALS.
In one short year, the devastation of ALS had taken over Jon’s existence, but he refused to let it break his will. He went back to Kona in October of 2006, not as a competitor, but as a voice for ALS and as a cheerleader; because someone did the competing for him. Brian Breen, a Chicago native who won a lottery spot, learned of Jon’s battle and decided to race in his honor at the 2006 Ironman. A more emotional scene one could not imagine as Breen, the “Crazy Irishman”, log-rolled over that line and ran to Jon’s side. They victoriously embraced each another as one more battle in the War was won. Luckily, NBC was there to “get it on film” and share it with the world. Thanks, Wooman.
Jon’s impact on the sport of triathlon is one that many will never forget. In February 2007, Jon was awarded the Competitor of the Year award at the Endurance Sport Awards ceremony. Two months later, the NBC broadcast of the 2006 Ford Ironman World Championship won a Sports Emmy Award for Outstanding Edited Sports Special, of which Peter Henning dedicated to Jon. Less than one month after Jon’s passing, the World Triathlon Corporation announced a new initiative where all domestic Ironman, Ironman 70.3, and IronGirl events will reserve race number 179, Jon’s Kona number, for a special athlete, a first in the world of triathlons. Since then, many warriors have requested number 179 at various sporting events throughout the country.
In two short years, Jon became a powerful voice for ALS, using the sport he loved to help promote awareness and fundraising to find a cure for this horrific disease. Jon passed away on May 27, 2007 and while he is missed dearly by those close to him, his spirit and the lessons he has taught us all live on.
Jon always believed in ending your story with a quote. Others have already said it best, so it’s better to remember those and go out strong. So here goes… “The meaning of life is to live life”…Thanks, Blazeman.
Barry is pround to say that over the years Challenge2ConquerALS has ctttttttontinued to make contributions to the Blazeman Foundation to support Jon's parents, Bob & Mary to honor Jon's wishes and mission to bring greater awareness, research and hopefully one day a cure for ALS.
To help expand research into the treatment and cure of amyotrophic lateral sclerosis (ALS), the Blazeman Foundation for ALS has donated $800,000 to the University of Maryland School of Medicine (UMSOM).
The funds will be used to boost research at the University of Maryland Brain and Tissue Bank, a human tissue repository that collects, stores, and distributes brain and other tissues for the study of ALS and other neurological disorders. The overarching goal is to develop new treatments, and potentially a cure, for these diseases.
A Poem by The Warrior Poet
Live…
More than your neighbors.
Unleash yourself upon the world and go places.
Go now.
Giggle, no, laugh.
No…stay out past dark,
And bark at the moon like the wild dog that you are.
Understand that this is not a dress rehearsal.
This is it… your life.
Face your fears and live your dreams.
Take it in.
Yes, every chance you get…
come close.
And, by all means, whatever you do…
Get it on film.
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