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Greetings Blazeman Warriors and Friends,

Here we are in the summer of 2016...9yrs ago this month we were numb at the loss of Jon as we drove back from Florida, carrying not only Jon's ashes but our golden, Sabrena's also, who we had to put down three weeks before Jon passed away. Sabrena would lay down at his door keeping watch.
That July began our new "normal" and we immersed ourselves in Jon's foundation...our way of dealing.
These years have produced lots of studies and some insight into ALS, but we all are waiting still for the big breakthrough. We recognize that ALS presents itself very differently in many people...the lucky ones progress slowly. Perhaps they have a chance for at least an effective treatment...we wish that for them.       
On August 30th, as always we will celebrate his birthday and will eat ice cream. Jon would have turned 45. Today, as I write this I am reminded that Jon's niece, Anna, went off to camp this morning wearing Jon's 2005 Ironman Finisher's shirt...his memory always with us.
Till next time...

Mary Ann and Bob,
Jon's mom and dad                      

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P.S.  Reminder!  A portion of your purchases from Amazon will go to the Blazeman Foundation. Or you can click here to make your traditional donation now!


Recent Research Updates and Reflections from Brandeis and University of Maryland


Dr. Avi Rodal and Team
We have recent an ALS research update to share with you...your donations at work! Please click on the link below for the latest updates from Dr. Avi Rodal...
On a happy note, the Blazeman Post Doc is a new mom of a beautiful daughter! Congratulations Dr. Deshpande!
Research Update from Brandeis University...
Update on the third year of research supported by the Blazeman Foundation for ALS to the Rodal Lab that resulted in a primary research article (currently under peer review), as well as a published review article.
From the desk of Dr. Justin Kwan at the University of Maryland...

Words of Hope from an ALS Clinic Director...
We are often asked by our ALS patients and their families, how can we help to find a cure for ALS? There are many ways that patients diagnosed with ALS have helped in the fight to find a cure, but one of the greatest contributions that patients can and have made is through tissue donation. Many of the advances in our understanding of the biology of ALS come from studies of brain and spinal cord from ALS patients. It is because of the generosity of these patients that seminal discoveries, such as the role of TDP-43 in ALS, were made. This singular finding has led to groundbreaking understanding of the relationship between ALS and other brain diseases. Mutations in TDP-43 can cause familial ALS. This finding may lead to the identification of mechanisms that contribute to motor neuron degeneration. Tissue donation by individuals with ALS is more important than ever as we discover new genes that cause ALS and recognize that not all individuals with ALS are the same. It is important to recognize the similarities and differences between ALS patients which may help to determine responses to potential treatments. Using human tissues to conduct experiments is important because ALS is unique to human beings. While animal and cellular models of ALS have provided excellent platforms to further our understanding of this disease, investigations in tissues from ALS patients remain critical.
So how can ALS patients help to find a cure? We ask that patients diagnosed with ALS consider donating their brain and spinal cord for ALS research because it may be the gift of life for future ALS patients.
Justin Kwan, M.D.
Director, ALS Clinic
University of Maryland Medical Center

From the desk of Dr. Ron Zielke...
After 25 years as director of a brain and tissue bank I have observed a distinct change in attitude on the importance of human tissue and research. In the 1990s the value of post-mortem human tissue was questioned because of the varied background of the donors and the length of time between death and tissue recovery. It was thought that these factors added unknown variables to scientific studies. Since that time it has been established that human genes, especially in the brain, are stable for at least 30 hours after someone dies. As more individuals make tissue donation, variables for age, sex and recovery times can be taken into account.   Perhaps most important is that it has become clear that while rodent model are helpful for preliminary research on human diseases, rodents are not people! There are unexpected differences between rodents and humans, especially in the way they respond to drugs. If all drugs that have "cured" cancer in rats worked in humans, we no longer would worry about cancer. The same can be said for other diseases.
Therefore, it is with great gratitude that individuals and families in the greatest crisis of their lives are willing to donate parts of themselves so that the day will come when no one with ALS will die due to ALS. For our part we gratefully acknowledge the support provided by the Blazeman Foundation to inform the ALS community of the need for tissue donors and to cover the considerable expense of tissue recovery. In the last 12 months seven individuals with ALS have left a lasting memorial that will allow researchers to address the many as yet unexplored aspects of ALS and bring us closer to a cure.
Ron Zielke, Ph.D.
Professor and Director

Recent New Blazeman Warriors!



Camille Damico


Desiree Oliveri McElheny


Greg Voudrie


We welcome these athletes as Blazeman Warriors, racing for a cause bigger than themselves! 




City Bikes 70.3 Miami opens relay slots!





For the first time the Miami 70.3 has opened up general relay slots. What a great opportunity for those athletes wanting to be part of a terrific event.


Thank you Wilber and team for supporting the Blazeman Foundation time and time again!


Please link here to sign up!

The 7th Annual Death Tour Ride by Barry Sopinsky...

A recap of the DEATH RIDE Tour ...Ride To Defeat ALS ...For Those Who Care.
We have just completed the 7th anniversary of the Death Ride Tour fundraiser for ALS. It was a great success and I would like to share with you some of the highlights.
Through the generosity of our sponsors, our collected donations and that of many others we were able to grant a wish for a man, Michael Cimburra, dealing with his crippling disease. Michael was a racing cyclist sponsored on a team by Groove Toyota.  Last year just before the 6th Anniversary of the Death Ride Tour he was diagnosed at the age of 50 with ALS. We had arranged for him to attend that year and speak on behalf of those affected by ALS at dinner the second night. At that time Mike was able to walk on his own, breathe without assistance and talk freely. Come 2016 this all changed. Confined to a wheelchair, breathing with a ventilator and speaking through a computer, Mike's wish was to participate in the 2016 DRT.
Along with his wife Nicolle he is the parent of 3 wonderful and supportive children, Aiden, Seide, and Nelle.
It is overwhelming to see the constant dedication and vigilance it takes to keep Michael alive but his family is with him all the time.
A few months prior to the 7th anniversary Mike had reached out to me to see if I knew anyone who could make a tandem bike for a "handicapped" person as he desperately wanted to experience the ride!!
Through happenstance in speaking with 2013 DEATH RIDER Mike Dunky, one of the owners at Little Machine Beer in Denver and the grace of God, I discovered a man named Zach Yendra who along with his father Carl had designed a bike to transport kegs of beer!! They are 2 crazy guys who do this type of thing for fun. Zach's father is an engineer and Zach builds bars.  Through my steady persuasion and some beer drinking they redesigned "the Bootlegger Bike" to accommodate Mike.  A special race car seat and harness was attached and space was also designed to accommodate all of Michael's life support. There was some motorized assist that would help Zach ride this heavy bike with Mike up the 16,5000 feet of elevation gain.
It would take 2 hours every morning to get Mike set up in the bike and his wife and family followed behind in their car for support along with the Energy Bus. Four of his neighbors from team Hackberry Lane, Chris Baker, Mike Besser, Glenn Levi and Scott Lawson also rode their bikes in support of Mike and they also share in his home care taking turns on their designated days. Mike's nurse Brian Richard rode for the first time in a major event along side the " Bootlegger Bike" each day supporting Mike and pushing him to continue through rain, hail & heat.
Words can't describe the sheer joy and elation that Mike showed and felt! To be able to experience the freedom of flying down the mountain passes with the wind and sometimes rain in his face at 55 miles an hour and to be immersed in some of the most breathtaking scenery, is a gift beyond measure!!!  It was such an overwhelming joy to experience this with him and his family and I'm extremely grateful for the opportunity.

We also had another ALS patient with us Robina Rogers, mother of Kellina Gilbreth. Attached is a great picture of them on the top of Molas Pass. This was the first DRT for Kellina who normally rode commuter trips and never really experienced much mountain climbing. Kellina completed the entire coarse. 

There were 35 special flags made to Honor & Remember those with ALS. The DEATH RIDE Tour always remembers the Blazeman at this event.
The DEATH RIDE Tour will be making their a donation of $10,000 to the Blazeman Foundation in the support of The War On ALS. We are very thankful to Bob and Mary Ann for what they do to help find a cure for this horrible disease. 


In addition the DEATH RIDE Tour was fortunate enough this year to have professional cyclist Tom Danielson and his wife Kourtney join us for all three days. They were both very gracious and supportive Ride Ambassadors. We hope they'll both come back again in 2017 and bring more friends like Ike Dana.

For all of you that participated this year I commend you for your courage, support and determination. I hope your experience was as heart warming as mine. Please come back in 2017 and bring more friends. 

I want to thank TOP DOG - Spiderman Drew Palser for his outstanding, #1 fund raising total of $8644 and recognition of the top Angel of Life. Not bad for a 19 year old.
We still do not have the final donation total available as more donations are still coming in, however, I want to thank you from the bottom of my heart for all of your support and generosity .!!! The event was certainly the true meaning of TZEDAKAH - To Give Back ...To Do The Right Thing ...To Be Righteous.

If you are ready to commit to this experience - well you can! 2017 Registration is OPEN! 

register here

Thank you all and best regards

Barry Sopinsky
President & Tour Director

Photo Gallery from the Battlefields!


Blazeman Warrior Greg Voudrie podium finish





Blazeman Warrior Jeff Galvin #489 with Michael Porter



Cherie Gruenfeld rolling at Honu 70.3


 Debra Saltz(left) continuing on her quest to do a marathon in all 50 states!




Pro Triathlete Matt Russell rolling the finish at IMTX 



Remembering Dick Van Ransom...


On June 3rd, a friend of Jon's and also the Blazeman Foundation, passed away suddenly in Dan Diego. Dick was co-owner of Mariposa Ice Cream with his wife Anna.  Needless to say, Jon became quite a regular at their shop and even brought his students there. After Jon passed away they quickly came on board supplying the ice cream every year at Aseltine's annual ice cream day in Jon's memory. Everyone that visited Jon in SD was taken to meet Anna and Dick and enjoy the best ice cream around! R.I.P Dick...


Visit the Mariposa!



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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."