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Summer Greetings Blazeman Warriors & Supporters!

 

MaryAnn New Headshot

Time is flying by as we approach the 10th anniversary of Jon's diagnosis and race in Kona.

 

Ironman has put out a promotion to honor and remember Jon for this milestone which I highlighted in the last newsletter. The athletes have begun their fundraising either through the Ironman Foundation or through our fundraising site as Blazeman Warriors. Thank you all for your support! The races this year will honor #179 well. If you wish to participate go to the Ironman website and click on the links. More details below in the newsletter.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thanks to Joe Goddard and Al Lamothe, along with race director, Kathy Robbins, organized the Blazeman Run which was held on June 14th at Aldrich Mansion in Warwick, RI. The weather was perfect and the race went off without a hitch! Webster Bank was our major sponsor and they came out in support with their tent and even raced. Webster Bank is the Foundation's bank and have become like family. Dave Kent, pictured 4th from the left below is the bank manager and his dad took our race pictures. When I received the disk from Dave and saw the number of pictures the disc held...#179...that sweet number keeps popping up in our life!            

Al Lamothe, the Webster team in blue and Joe Goddard!

 

The Kids Run

 

 

  

Blazeman Run Picture Collage

 

Speaking of #179...Andrea and Dave Peet, along with friends and relatives came a distance for the race. Andrea wore #179 and did the race in her super trike. In a quiet moment before the race Andrea spread Jon's ashes under a tree at the race start. Jon was there with us as always. 

 

Bdad with DP and Andrea leaving a part of Jon at the race...                                     

Along with the race this year we decided to present the Blazeman Spirit Award to Mark Searles, a local friend and athlete that actually went to school in Seekonk with Jon. We felt that we had brought the award home where it truly belongs. More on the award and Mark in this newsletter.

 

In parting, a reminder that August 30th would have been Jon's 44th birthday. We invite you all to have ice cream in Jon's memory and make it a large serving! Our life without Jon these past eight years certainly remind us of what we had...a special son indeed whose finest moments came in the face of ALS.

 

Fondly,

Mary Ann

Jon's mom

From the Battlefields

 

The Steve Gleason Act!

Because of advocates like you, the House of Representatives passed the Steve Gleason Act. This bill ensures access to Speech Generating Devices (SGDs) and eye tracking technology and allows people to keep their SGDs if they are admitted to hospice, a hospital or nursing facility.

 

The bill also allows people to purchase SGDs and restores their ability to upgrade SGDs, allowing people with ALS (PALS) access to their email, the internet and environmental controls. SGDs empower PALS to continue communication with their friends, family, colleagues and peers.

 

This is a huge victory for the ALS community and special thanks go to those who wrote to their local representatives, urging them to pass the law. Special credit goes to Team Gleason and Steve Gleason who fight so hard for people living with ALS and paved the path to victory with this bill.

  

 

The Alan Wolfe Story

Blazeman Warrior, Alan Wolfe, competed at Couer d'Alene Ironman in June wearing #179...his story on the Ironman website.

                          

We know Alan did not have the race he wanted...Alan, Jon would tell you to do it all over again...because you can!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Congratulations are in order!

Huge congratulations to Chrissie Wellington and Tom Lowe who are expecting their first child in Dec. Chrissie was an amazing ambassador for the Blazeman Foundation for ALS during her triathlon career and after. Below are Tom and Chrissie's ice bucket challenge pictures she sent to me from the UK last summer!

 

 Tom and Chrissie's-Ice Bucket Challenge 2014

 

 

Ice Bucket Challenge 2015

Many ALS organizations will be hosting another Ice Bucket Challenge in August... please consider a donation to the BMF when you consider participating. No one organization owns this way to create ALS awareness and many of the smaller ALS foundations will make sure your dollars count! Thank you to all in advance when considering Jon's foundation..."So Others May LiveĀ®"

 

                            

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 Debra Saltz, Blazeman Warrior and Our Queen of the IBC 2014! Debra repeated this challenge 16 times on her back deck!

 

 

Blazeman estore

Our Blazeman gear can be purchased through our website from Nightmare Graphics.

Blazeman Warriors may purchase replacement tri kits...just contact Andrea Sinnott directly at Nightmare Graphics.

 

More updates on the estore below...

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The 3rd Annual Iron Horse Triathlon  

 

The Iron Horse Triathlon was held in Morgan City, Louisiana on June 28th and is organized by the Leonard Family. This race has the best swag and prizes around! Check them out on FB. This race in held annually in memory of Lynn Leonard.

 

These sentiments posted on their FB page sums it up for the Leonard Family:

"We would like to express our sincere gratitude and appreciation to all of our volunteers and participants for braving the inclement weather on race day. Without your continued support our race could not be the tremendous success that it continues to be.

 

Throughout this rewarding journey we have touched many lives, made lifelong friends and raised money for a cause that is near and dear to our hearts. We will continue to fight until we finally hear the words "I am an ALS survivor!"

"Your dedication and commitment to our race is sincerely appreciated and will ensure that we will continue "waging war on ALS!"

 

- The Iron Horse Triathlon Family

 

The Blazeman Foundation is so appreciative of the Leonard Family's support. Please check out the hundreds of pictures on their FB site.

 

 

Team Drea Challenge continues to race in honor of Andrea Peet, who is an amazing ALS Warrior. Andrea's Blazeman Run race report (link) Thank you all for your continued support!

 

 

Blazeman Warrior Phil Gormley...

 

Last but not least by a long shot...Phil Gormley's Blazeman gear gathered for his 1st place AG finish at the Montauk Lighthouse Tri on July 19th!

 

In Phil's own words..."We Don't Give UP....So Others May Live"...was a pleasure to ROLL across Montauk Sprint Tri, a day with SO many positives.

Team Larry Update! by contributor Paula Bieshaar...

 

 

"Competitor 179 - Jon Blais. Everything looks good for him, but it really is not. Essentially, Jon's been given a death sentence. A cruel disease has already rendered his hands useless - but his effort today, is not."


 

With those few sentences, Al Trautwig introduced Jon Blais to the world. He started by giving Jon's bib number, 179, even before his name; and ended with the seemingly modest statement that Jon's effort that day was not useless.


 

As we approach the ten-year anniversary of Jon's heroic accomplishment at the Ironman World Championships, we can look back and know - with certainty - that his effort was not useless. His passion for life, and determination to finish a race that is daunting to those in the best of health, has left an enduring legacy. Not only have people been inspired to 'face your fears' and 'live your dreams', but ALS has been brought out of the shadows into the light of day, making people aware of its devastating effects and the need for a cure.


 

In 2007, the World Triathlon Corporation (WTC) declared Jon's number honorific - it will be reserved for athletes racing for a charitable cause. Competitors can apply to wear #179 during their event, but if no athlete requests that number for a particular race, it will not be assigned to anyone. Since that time, Blazeman Warriors across the country have worn Jon's number, furthering the efforts toward ALS awareness and keeping Jon's spirit alive. In fact, the cause has reached the point where the honor of wearing #179 is a competitive process - raising the standard, so it will be worn by the athlete who most exemplifies the spirit of the Blazeman.


 


 

For the Boulder 70.3, held in June, #179 was awarded to Cynthia Moses McKay of Team Larry (first introduced in the Summer 2014 newsletter). Cynthia's tireless efforts over the last four years toward organizing and inspiring Team Larry touched the members so much that they initiated the campaign to surprise her with #179. No less than a dozen members of Team Larry wrote heartfelt letters to WTC detailing what Team Larry and Cynthia herself has meant to them, and explaining how she embodies Jon's legacy. Cynthia's sister-in-law, Jill Moses, compiled the letters, submitted the application and shamelessly stalked the WTC until she received the good news.


 

Team Larry has a tradition of gathering for a team dinner a couple of nights prior to their races. In addition to raising money and awareness for ALS, a large part of their mission is building a sense of community. Whether training for a brutal endurance event, or battling a cruel disease, the burden is more manageable when shared. Team Larry members may come and go, but all carry with them the bonds formed during their time together. So it was on a warm evening in June, that 42 competitors, friends, family, Larry and even B-Mom & B-Dad (via phone) gathered to celebrate their undertaking with the added pleasure of presenting Cynthia with the packet of letters and the #179 from WTC.



 

Race day in Boulder, Colorado dawned hot. Though the athletes had quite the task in front of them, there was an extra spring their step knowing that one of their own was wearing #179. And, as is always the case at an Ironman event, there were those special moments that remind us of what's truly important. Cynthia's parents were at the finish line and medaled her as she crossed. Larry, despite already experiencing the debilitating effects of ALS, surprised his first-time triathlete daughter, Julie, at the finish line as they rolled across together. It's safe to say, there wasn't a dry eye in the house.


 

In the aftermath of the day, Cynthia's assessment of her own performance was that it wasn't an especially great race: "I sludged through it, and probably only finished because of the number I was wearing." And that, in a nutshell, is Jon's legacy. To use Jill Moses' eloquent words, "It's that tension between grit and grace that allows you to continue to the finish line when you're going through hell." The effort is not useless.

Competitor #179 Program is Going Strong!


In the last newsletter I introduced the program set up for the 10th anniversary of Jon's 2005 race in Kona.


 


 

The program is in full swing now with scores of athletes applying for Jon's number. Ironman has shared the names and applications made to Ironman. So many of your stories are very touching and the athletes have asked for the right reason. Unfortunately, many have been touched by ALS in some way. Along with the application process is a way to fundraise for the BMF either through the Ironman Foundation or our fundraising site.


 

We thank all who took the time to apply and fundraise for Jon's foundation. In the last few months of his life Jon worked tirelessly setting up the mission statement and vision for the Foundation...as his energy and body faded his mind was so clear. We have continued to carry out his mission and always will.


 Bob and I look forward to following the athlete's races in the coming months. Hopefully, I will get many new race pictures from athletes wearing #179! Stay tuned!

Meet Blazeman Warrior, Joe Goddard


Many of you know Joe as the face behind the recent Aldrich Run. Or maybe you attended one of the many Spin for ALS events that he also organized. (How many? So many that he lost track of the actual number. "And that's a good thing, I suppose", he said.) Many people know what Joe has done but not many people know why.

 

Joe's connection to the Blazeman Foundation is a story of inspiration that began before there really was a Foundation. It's a familiar story of another person watching the 2005 NBC coverage of the Ironman in Kona. "That story inspired me so much that I made a plaque for Jon and sent it to his family. I probably watched that video a hundred times over the past ten years", he added. "They thanked me for the plaque and for a while I didn't think much of it. Then about a year or two later as a participant in the IM 70.3 in Providence, I happened to run into Bob in person. I'm glad that chance encounter reconnected me to the Foundation which inspired me so much."

 

As Joe describes it, that inspiration helped him on his personal journey to lose weight (down from 265 pounds), race a number of triathlons and running races and ultimately prepare for his first Ironman. He was training and racing for something bigger than himself, fueled by watching a YouTube video over and over again. "I never had an opportunity to meet Jon in person but early on we sent a couple emails back-and-forth."  

 

That inspiration also drove Joe to organize the many Spin for ALS events and this year, the Blazeman Run at Aldrich Mansion. In year's past, the Run for PALS events were held at a different location. "We felt that it was time to bring it back, to grow it we needed to host it at a bigger location so we chose the Aldrich Mansion site." (Look familiar? It was also the location where they filmed the movie "Meet Joe Black.") "This was our first year and everything went really well-even the weather! We offered a 5K,10K, and even a kids fun run. "I didn't have as much as chance to spend time at the line because I was working on the course. So, my only disappointment was missing the chance to see the rewarding look on everyone faces. People rolling across the finish line and be more social but it was a great day and we had great feedback. Everyone I talked to said they are eager to race again next year."


 

"On a personal note, organizing these events has been my way of giving back to the Foundation for the ten years of inspiration that Jon has given me. From 2005 when watched it hundreds of times to my first Ironman (Montreblant) in a few weeks."

 

That will be the peak of training, inspiration and honor for me because when the starter gun goes off at the start of the swim, I'll be wearing #179.

 

Good luck, Joe. Now YOU are an inspiration to US.


 

Brandeis ALS Research Update


Sorting Neuronal Survival Signals

 

For many years, it has been known that growth factors secreted by the muscle control neuron-muscle connections and the survival of the motor neuron. Dr. Mugdha Deshpande, the Blazeman Foundation Postdoctoral Fellow for ALS Research, has been working to understand how mutations causing ALS alter the transport of these survival signals within the neuron, in Avital Rodal's lab at Brandeis University. Using fruit flies as a model, their group has shown that growth of neuron-muscle connections is compromised in flies expressing a human ALS gene. This disruption of neuron-muscle connections is associated with the loss of a molecular growth signal. Her recent work in collaboration with Zachary Feiger, a graduate student in the Rodal lab, has identified defects in the transport of growth signals as well as mitochondria (the energy factories of the cell) in diseased neurons. Recently, they have identified an effective method to reroute transport of the growth signals in the fly model, pointing them towards a set of cellular machines that might be therapeutic targets in ALS.

 

In parallel, Dr. Deshpande is working with Dr. Suzanne Paradis at Brandeis to develop a system to study these signals in mammalian neurons expressing the same human ALS gene, to test if there are defects comparable to those she saw in the fly model. She has found that growth of these neurons is severely affected when they are modified to express this ALS gene. Graduate student Josiah Herzog has been working with Dr. Deshpande in Dr. Paradis's lab to examine if these defects are related to problems with specific growth signals. By understanding how growth and survival signals are being diverted from their normal itinerary in diseased neurons, it will be possible to develop new therapies to return these signals to the appropriate location.

 

 

Brandeis ALS Research Group at Brandeis University from left) Dr. Suzanne Paradis, Zachary Feiger, Dr. Avital Rodal, Dr. Mugdha Deshpande (Blazeman Fellow), Josiah Herzog.

The Blazeman Spirit Award

 

The Blazeman Foundation for ALS was thrilled to award "The Spirit of Blazeman" award at the 2015 inaugural Blazeman Run at Aldrich Mansion.  Many athletes have watched the video of Jon competing in Kona at the World Championships back in 2005. Jon was approximately 18 months into ALS at that time as he gave everything he had to finish before the 17hr. cutoff. He did finish and rolled across the finish line as he said he would, to bring attention to a cruel disease with no treatment or cure.

 

There was another important side to Jonathan Blais. If asked, he would always say, "I am a teacher first." As a special education teacher in San Diego at the Aseltine School, Jon had found his true calling there. Jon focused his energy on helping kids who were emotionally challenged and learning-disabled. This is also where he became better known as "The Blazeman." Jon did amazing work with his students, bringing his love of sport and the outdoors to these young boys and girls. Through summer recreation programs and outdoor activities, his students learned to overcome obstacles and become stronger through hard work and determination. The Spirit of Blazeman award keeps Jon's memory alive by recognizing an individual who inspires others to become a better person, who leads by example, and has a passion for the journey of life.

 


 

2015 Spirit of Blazeman Award recipient: Mark Searles

Mark grew up in Seekonk along with Jon and shared many of the same friends and knew each other. Mark has been a Blazeman Warrior for several years supporting Jon's Foundation many times over. He raced the Boston Marathon twice for the Foundation and lends himself as a local TV personality to our cycle events. Watching Mark through the years we have seen many of the same qualities that Jon had...an easy going personality, good athlete and he puts 100% into whatever he does...leading by example. It was our great pleasure to award Mark the Spirit of Blazeman Award for 2015.

 

Congratulations Mark!

Blazeman Gear update!


As of mid September all athletes that wish to become Blazeman Warriors will be receiving their gear from the Blazeman Foundation directly. Nightmare Graphics can no longer be our gear provider. We thank them all for all the years they have been there for us. Their business is expanding (a good thing!) but they need the space.

 

This means that we will have to make some changes, so stay tuned for that. We will continue to supply our warriors with what you need when registering. The rest will be decided soon.

 

So, for those who have been thinking of some new gear...the time to order is now!! Please use this link for ordering.

A Warm Welcome to our newest Warriors!

  

We are pleased to welcome the following newest warriors to our family. Thank you, and everyone else, for all you do to help our mission.

 

David Mann

Kelly Garland

Alan Wolfe

A big welcome to you and we hope to see you at a race this year...please visit our ning  website and start communicating with other warriors and supporters. 

Gallery

Thank you so much for sharing your highlights and favorite moments!
But don't stop now! Please keep sending your photos of the many events coming!

This is a copy of the email notice the #179 Ironman
athletes receive announcing they have been chosen!


Blazeman Warriors Matt Lagor and Mark Searles who always
show up in uniform. This is from the Blazeman Run

The Murphy Family at the Blazeman Run...Jenn, Jason and Anna
(Jon's sister, brother-in-law Jason and niece Anna)

Anna rolling the finish at Blazeman Kids Run at Aldrich Mansion

 
Phil Gormley( in Blazeman kit) 1st place finish in his Age Group at the 2015 Montauk Tri

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."