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Thank you to these great friends and brands for all of your support. Warriors, they're there to support you, too! Think of them for your next event or purchase. 
      
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Blazeman Warriors keeps growing! We are proud to have you representing us on the battlefields!
 


Holiday Greetings Blazeman Warriors and Supporters!

 

MaryAnn New Headshot

Well, 2014 is coming to a close. For many of you, it's the off season but for us, a busy time of planning. The 10th annual Blazeman Foundation Cycle for ALS  is just around the corner. I want to give a huge thank you to all who have continued supporting Jon's foundation year after year. We could not do this without you! Jon attended that first cycle event in Pallatine, Illinois back in 2006. He was still able to travel at that point. Please consider a donation to an event listed on the cycle site if you cannot participate. All donations are tax deductible. (Fundraising link)

Recently I had the opportunity to write about Jon for Triathlon Inspires. Please take a few minutes to read Jon's story online www.triathloninspires.com.  If you are on social media check them out and support them by liking their Facebook page. I appreciated their kindness and consideration guiding me through the process.

 

This newsletter contains an interview conducted by Kelly Fahey with Blazeman Warrior, Yair Shalev. Yair has been a tremendous supporter of the foundation. He and Bob met several years ago at our Kona expo booth and have been good friends ever since. Cyclists will love their new product!

Allysin Bridges, #179 in Kona this year, remembered both her father and Jon by rolling the finish line...perfect form Allysin! The photo below was one of the photos highlighted on the Ironman 2014 photo gallery!

Photo by Nils Nilsen
A special shout out to Amy Avery, #179 at Ironman Arizona. Amy had a crash on the bike portion but thankfully she is out of the hospital and recovering at home. Amy, our best wishes for a continued recovery!

   

As 2014 comes to an end we all tend to reflect on the past year and look forward to 2015. New Year resolutions aside, our wish as always is that one of the many research scientists finds the elusive cure for ALS. We do not care who or where the discovery comes from...just that it's found. I remember Jon saying when asked about all his success at Ironman in 2005 how gladly he would give it all up to have his day job back. ALS would end his life soon...all he wanted to do was continue teaching and someday raise a family. That was not in the cards for Jon and so many pALS diagnosed with ALS. Let's make 2015 a year that changes that!         

We wish you all a very Happy and Healthy New Year!!!!

 

'til next time,

Mary Ann

Jon's mom

From the Battlefields

 

The latest from Andrea Peet who we introduced to you in our Fall Newsletter.
Please take a few minutes and follow Andrea as she lives with ALS.

In October Steve Lamothe and Bill Almond brought Jon's ashes to the Beach to Battleship in North Carolina. From Bill..." Steve and I were honored to participate in this ceremony where we released Jon into these waters so he can be with his triathlete brothers and sisters into eternity".
"So others may live"

 

  

  

  

  

  

  

  

   

 

 

 

 

 

 

 

 

Check out the Blazeman estore! Perfect holiday gifts await! A great way to support the Blazeman Foundation and ALS awareness!! Many items available including the bike shirt modeled by Blazeman Warrior Mark Searles!

 

A big thank you to Daniel Ong from Singapore who competes in the Standard Chartered Marathon Singapore on December 7th and included the Blazeman Foundation in his fundraising!
 



Hartford Quarter Marathon
. We are again the beneficiary of the Hartford Quarter Marathon THANK YOU!!!! 
Run by constant supporter Kelly Burns Gallagher, triathlete and race director in Connecticut and they always have an Easter Egg Hunt for all the kids!!     
Why donate to the Blazeman Foundation for ALS

Jon  

As a small family foundation we have continued Jon's mission statement to fund cutting edge ALS research and now we are adding to that a small community ALS funding to help support a specific need to an ALS family or another non profit that supports pALS in the community, specifically
MAC ANGELS out of New York.

 

Please visit our website and review our projects up to date. Because we are small we are not looked at and rated by organizations such as Guide Star and Charity Navigator...they only look at charities that bring in at least a million dollars per year (we wish!) Our 990's are available to anyone who asks and be assured that over ninety cents on the dollar goes to the mission statement...our expenses are minimal ...no salaries, bonuses or rent.

 

Please consider making a gift today. Your donations
are important to us and every donation receives a personal thank you and tax receipt within 24 hours...a bdad rule!

   

Thank you in advance...may you all have a healthy and Happy New Year!!!

Cycle for ALS 2015!

 


In  2006, Jon attended the first Cycle for ALS in Palatine, Illinois...nine years later it continues to be our main research funding event. Thanks to all the wonderful supporters that come out year after year in February/ March we have been able to fund some great research...the first being right in Chicago at Northwestern. Please visit our research page and see what has been accomplished through your fundraising! Consider having an event in February/March for ALS research! We need you!

We would like to continue to grow our sites that host a cycle event...it can be indoors at a cycle studio, gym or like
Carrie McCoy's event in a mall or Brett Jenner's at the car dealership of Dan Dortic! If you in a warm climate an outdoor cycle is great! Please consider helping us as a new event host...a big THANK YOU to all that come out year after year..."So Others May Live´┐Ż"

 

Be the arms and legs for those that can't by "Taking them for the ride of their lives"!  If you can't host or attend an event...consider a donation to one of the sites!!  Every dollar is appreciated!

www.cycleforals.com

Love to hear from you all...please email me.

Our research update from Braindeis University

 

The Blazeman Foundation's supporters have helped to fund Dr. Mugdha Deshpande, theBlazeman Foundation Postdoctoral Fellow for ALS Research in Avital Rodal's lab at Brandeis University. She recently presented the poster, below at the Neurodegenerative Diseases: Biology & Therapeutics Meeting at Cold Spring Harbor Laboratory earlier this month. Click on the image below to see this poster in a higher resolution. 

Check out Patchnride!!


Patchnride was developed in South Florida in early 2012 by a collaboration between partners who are cycling enthusiasts, engineers and successful entrepreneurs.

 

Among these is Yair Shalev, Blazeman Warrior, accomplished triathlete and avid cyclist.  

 

 

After too many flats and losing races because of flat tires, their team set out to find a solution and engineered the world's first permanent flat tire solution on the go!

 

The idea for patchnride began after being frustrated with losing first place at a 12-hour race after 264 miles in the lead because of a flat tire. Their team looked for a solution to permanently repair tubular tires on-the-go, no matter where you are and under any condition without being a sealant.

 

Through the development of the Race Tubular Puncture Repair, they discovered that their invention has a much broader appeal and application and designed and engineered patchnride with that in mind. For the first time ALL inner tube tires can be repaired permanently and effortlessly without taking off the wheel from any kind of vehicle. That includes Bicycles, Lawn mowers, Motorcycle, Wheel Chairs, Running Strollers, Golf Carts etc.

 

Proceeds from the sale of every patchnride will help support the Blazeman Foundation. They're a hot item so be sure to preorder yours today. Deliveries are scheduled soon.

 

Because "nothing deflates the joy of bike riding or ruins your race quicker than a flat tire."

  

Check out the really amazing demo video and the company web site today. 

Ten minutes with Ronald Zielke, Ph.D. of the University of Maryland Brain and Tissue Bank. 

Recently, our newsletter editor had a chance to catch up with Ronald Zielke, Ph.D. of the University of Maryland Brain and Tissue Bank. Their team have been good friends of the foundation for years. We wanted to learn more about his work and share updates with our readers.

 

Blazeman Foundation: How did you first come to know the Blazeman Foundation? 

 

Dr. Zielke: Jonathan Blais was a close friend of my senior pathologist. Both were athletes who participated in the Ironman Kona.  Jon decided that he was going to fight ALS in whatever way possible and asked that my pathologist recover his tissue after he died. Subsequently, Jon's parents continued the foundation Jon started before he passed away and decided that one way they could honor Jon's commitment to the fight was by offering the opportunity for other families to also donate ALS tissue.

 

Blazeman Foundation: Dr. Zielke, what exactly is a brain and tissue bank?

 

Dr. Zielke: A simple answer would be that a brain and tissue bank is a resource center for human tissue that can be studied to have a clearer understanding of human biology.  However, this does not address why people should consider donating tissue from families.  In fact, a brain and tissue bank is a joint endeavor by families who have a family member with a serious medical condition and by researchers who want to study these conditions with the hope that they can provide medical solutions to the families.  From 23 years of experience I can attest that it is the combination of these two aspects that is the driving force behind a successful brain and tissue bank.  Families have to be confident that donated tissue will be used to further an understanding of their disorder before they are willing to make the donation and researchers have to be confident that a sufficient number of families will donate tissue to provide the number of samples needed to statistically evaluate their hypotheses.

 

Blazeman Foundation: What is your role?

 

Dr. Zielke: I am director of the bank which means that I am involved in all aspects of the bank.  I set policies and set guideline for procedures for collecting, processing and distributing tissue. I interact with support groups, researchers and NIH staff.

 

Blazeman Foundation: How does what you do help with research on ALS?

 

Dr. Zielke: By working closely with the Blazeman Foundation we have developed protocols for collecting the most likely tissues involved in ALS.  These include the spinal cord, brain, muscles and cerebral spinal fluid.  These tissues are evaluated for cellular damage and RNA quality before they are distributed to researchers.  In this manner the bank can provide researchers with high quality tissue for their research studies.

 

 

Blazeman Foundation: What are your latest accomplishments?

 

Dr. Zielke: A recent study utilized tissue from the bank and compared the metabolic profile of a mouse model for ALS and human ALS tissue.  The observed changes may provide a different approach for treating the symptoms of ALS (PNAS 110:10812, 2013).  An earlier study with tissue from the bank documented changes in the vasculature that may disrupt the barrier between blood and nerve cells of the brainstem and spinal cord. Such changes may allow the entry of deleterious compounds into the nerve cells (Brain Res. 1469:114, 2012).  These and on-going studies with donated ALS tissue are the hope for conquering ALS.

 

 

I am grateful for the families who have decided to donate tissue.  It is leaving a legacy that will touch thousands of people in the future.  Some families are not comfortable with donating tissue from their loved one.  That is the correct decision for that family. However, they should make an effort to further ALS research by other means such as helping other families in time of crisis.  Families can also support organizations that are active in finding a cure for ALS.

 

Photo Gallery

Thank you so much for sharing your highlights and favorite moments from the 2014 events! But don't stop now! Please keep sending your photos of the many events coming!

  

  Steve Lamothe coming down the chute during the B2B 2014

  


Blazeman Warrior Paul Fahey running his first ultramarathon around Canandaigua Lake in New York.

  

  

Jeff Galvin enjoying a beautiful fall day for the Red Flannel Ride in November 2014. (Does anyone else notice the custom wheels?! AWESOME!)

  

Cherie Gruenfeld, friend and supporter of the BMF honored by Sports Illustrated! 
A big congrats to Cherie!!!!

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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."