May 2018
Blazeman Foundation for ALS Newsletter

Make a donation today!
Join Team Blazeman!
 
The list of registered
Blazeman Warriors keeps growing! We are proud to have you representing us on the battlefields!
 







Dear Blazeman Warriors, Friends and Supporters,

May is the month to look back and remember all the wonderful people we have met that have been affected by ALS. When Jon had his diagnosis confirmed on May 2nd 2005 while in California our lives as we knew it changed forever. Today, 13 years later that diagnosis outcome is unchanged. Still no effective treatment or cure. It hurts to even write those words...

I am still driving Jon's car that has the Blazeman Foundation for ALS imprint on it. Many days I have been stopped in a parking lot by someone that has been touched by ALS...many of them tell me how active and athletic that person was and want to know if there is some connection. I don't have the correct answer to give them. We think there is a trigger of sorts but the missing links are still there. 

May 27th will be the 11th anniversary of Jon's passing. Take the day, have some ice cream and celebrate his life and all those others that found their freedom from ALS.


In Strength, Honor and Freedom,

Mary Ann and Bob,
 
Jon's mom and dad



To Support a particular Blazeman Warrior...



IRONMAN'S 40 year of Dreams

Bob was interviewed a few weeks back in Seekonk, Massachusetts by the Ironman Production Team reflecting back on what Ironman meant to Jon and what he wanted to accomplish...finishing and putting a face on ALS. Jon did that and more.

My contribution...an excerpt of what I sent to Lee Gruenfeld for his article about Jon for the 40 years of Dreams. 

 









"From the time Jon was 12 he had dreams of doing the Ironman at some point in his life. Our yearly tradition of watching the IMWC on TV every year as a family watching the big four and others digging deep to cross that finish line solidified his love of the sport. For me, it was always about those inspirational stories...little did any of realize Jon's one opportunity would come as a one time chance at age 33 in the throws of ALS. Lee, I have always believed that Jon was the most challenged athlete that day...there would not be a do over if he failed to finish. He had that one chance to put a face on ALS and his last race had been in October 2003 when he had raced his heart out that year as he prepared to put triathlon on hold while he taught full time and worked on his masters in special ed in that accelerated year long program.
I remember clearly the day that he got the call from Ironman that he would be one of their stories...it was very bittersweet...not how he had planned to do his dream race. On top of that he couldn't train-they thought it would accelerate the progression of his disease. His preparing was limited to drawing on his race experience, digging deep into his mind and soul to make it to the finish before the cutoff, actually meeting all the cutoffs.
 
Bob and I wanted success for him...he would always say that not finishing was not an option...it was the longest day of our lives...rolling across the finish became a symbol for a "treatment and a cure" which still lives on today. He carried the weight of so many Pals ( persons with ALS) that day.Jon had inspired so many to enter the sport and also helped triathletes dig deep when the going got tough. We will always be grateful to Ironman for making Jon's number 179 an honorific number back in 2006 in Clearwater at the 2006 half Ironman championships. 
Ironman gave us all the opportunity to meet so many wonderful and supportive people. Yes, Chrissie, Leanda, Dede, Matt Russell (he lost his mom to ALS) Mike Reilly, Dr Bob Laird, Peter Henning, Ken Woo and ST, just to name a very few...the kindness of strangers that helped make Jon's last months meaningful...while he sat here in this condo just a few feet from where I am sitting now, building his foundation. 
We are also grateful to have all the Ironman Videos where we can watch Jon frozen in time...hear his voice and also the voice of Al Trautwig refer to Jon as Competitor #179, Jon Blais   



 
Jon's foundation has made inroads in the WAR ON ALS...he was the first back in 2005 when very few knew what ALS was...we only wish we would live to see the day an athlete with ALS crosses the finish line and says...I am an ALS survivor".


Greater Hartford Quarter Marathon

Thank you again for making the Blazeman Foundation for ALS the beneficiary of this great event!



From the Facebook site...
"In addition to having a great race on Saturday, we were also able to raise $3,400 for the  Blazeman Foundation for ALS, Inc, MA. Thank you so much to everyone who made this possible."


University of Maryland Brain and Tissue Program

The BMF tissue program has recommitted through April 2022!
Dr Tom Blanchard Director

This month the BMF committed to another 4 years of support to the Blazeman Foundation ALS Tissue Acquisition Program at The UMDBTB. Jon donated his ALS Tissue there...which was harvested here in Florida on May 28th, 2007. A special thank you to Dr Ron Zielke, the former director, now retired and to Dr. Blanchard, the current director for all their assistance in making this possible in Jon's name.


Welcome New Blazeman Warriors

David Eagle                 Sean Gray

CJ Edmonds                 Gina Welc

We welcome these athletes as Blazeman Warriors, racing for a cause bigger than themselves! We hope you all apply to wear bib #179 in your races!



 
Blazeman Cycle for ALS
Thank you Phil Gormley!



 

Year after year Phil has organized a cycle event fundraiser for the BMF...and we in turn over these same years have supported MAC Angels in their mission. Non profits can and should work together when there is a common cause. Thank you again Phil and MAC Angels for your support!

"Don't Give up...So Others May Live"



-blazeman
 
new footer
On May 2, 2005, twenty-year Multi-Sport veteran Jon Blais a.k.a. "Blazeman" at age 33 was diagnosed with the fatal motor neuron disease ALS (Amyotrophic Lateral Sclerosis). Blazeman dubbed himself the "ALS Warrior Poet" and brought his battle to the big island of Hawaii on October 15th that year, where he became the first person with ALS to complete the Ironman World Championships. It was his last race. In 2006, a number of athletes, inspired by Jon's 2005 efforts, rolled across the finish line in Hawaii in honor of Jon and his battle against ALS. In 2007, the Blazeman Foundation for ALS expanded Team Blazeman, comprised of "Blazeman Warriors" who have committed to raising awareness and funding a search for a cure for ALS..."So  Others May Live."