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Greetings Blazeman Warriors, Friends and Supporters,


Eleven years ago today the Blais and Murphy family were all in Kona to support our son Jon in his quest to put a face on ALS. We were all stressed to the max as we wanted so much for Jon to finish the race. Thinking back, even now, all these years later we are still in awe. How does an athlete approximately 18 months into this disease accomplish such a feat? Talk about digging deep! 



We are so grateful to have the NBC footage from that day...we can still hear Jon's voice and see his face...it keeps him alive for us as he was at age 33...



Kona 2005
Kona 2005



Thank you, again... Ironman, Peter Henning, Wooman, Alex Piper, and Scott Boggins! Also, to the countless others we met on that journey.

This Sunday, #179, Debbie Ragals, will toe the line in Kona. Debbie has known Jon from the beginning. We wish her the best and look forward to hearing from her all about the day...and Debbie, GET IT ON FILM!!

In Strength, Honor and Freedom,

Mary Ann and Bob,
Jon's mom and dad


  
P.S.  And now there are two ways you can show your support. A portion of your purchases from Amazon will go to the Blazeman Foundation. Or you can click here to make your traditional donation now!

         
          



Research update from Brandeis!





Brandeis research group makes progress in the fight against ALS... Brandeis researchers found and fixed an abnormality in flies' nervous system, restoring their ability to crawl. Understanding what goes wrong inside nerve cells could have implications for human disease.
Photos/Charles A. Radin
By Lawrence Goodman Aug. 29, 2016


A Brandeis research group has found a way to repair a vital signaling mechanism in fruit flies with symptoms of ALS. As a result, dying motor neurons regained health and the once paralyzed flies regained partial motion.
The discovery represents a significant breakthrough in our understanding of what goes wrong in ALS when signals called growth factors travel from around the body to the spinal cord where they promote the growth and survival of motor neurons. It's the eventual failure of motor neurons in patients with ALS that leads to muscle decay.
"We didn't cure ALS in the flies," says Rodal, "but we did make them significantly better."
The work was done in the lab of assistant professor of biology  Avital Rodal. It  appeared online in mid-August in "Molecular Biology of the Cell." Financial support came from  The Blazeman Foundation for ALS Research.
ALS, short for amyotrophic lateral sclerosis and also known as Lou Gehrig's disease, is a neurodegenerative illness where muscles waste away, leading to the inability to speak, move and eventually breathe. Around 30,000 people in the United States suffer from the illness. Patients typically die three to five years after the onset of symptoms. In 2014, The Ice Bucket Challenge, where participants dumped a bucket of ice on their heads, raised new awareness about the disease.
Rodal works with flies that have been genetically modified to contain mutations similar to those found in humans with ALS. Her research focuses on vesicles, which are essentially membranous suitcases packed with growth factor molecules. Some get manufactured in the limbs where nerve endings make contact with muscle tissue. They then travel along the nerves' fibers or axons to the spinal cord where the nerve cell nuclei are located. Axons can stretch several feet long so the vesicles rely on "motors" to propel them quickly toward the spine.
In people with ALS, something malfunctions so that the growth factor doesn't wind up effectively communicating with motor neurons, triggering cell death. The big mystery is what exactly is going wrong.
Researchers in Rodal's lab found that the problem occurred at the start of the vesicle's trip in the nerve endings. In the ALS model fruit flies, the growth factors were packaged into the wrong kind of vesicles, and the movement of vesicles was faster and ranged over larger distances than in fruit flies without ALS.
Finding this abnormal vesicle movement was a major breakthrough. Rodal could now modify the fly's genes so the vesicles moved more like they do in healthy specimens. This gene modification also restored growth factor function, and the neurons recovered enough to allow the flies to crawl more efficiently.
"If we find a way to tweak the same trafficking machinery in patients as we modified in the fly," Rodal says, "it might be a way to help return their neurons to a healthy state."
Blazeman Foundation for ALS Research postdoctoral fellow Mugdha Deshpande and doctoral student Zachary Feiger were co-first authors.  Other authors on the study were Amanda K. Shilton '18, Christina C. Luo and Ethan Silverman.



Mugdha Deshpande...Blazeman Fellow


Blazeman Foundation for ALS research postdoctoral fellow Dr. Mugdha Deshpande, working in the lab of Dr. Avital Rodal at Brandeis University, has published the first results of her Blazeman-funded work. The article, published in the journal, 'Molecular Biology of the Cell', summarizes Dr. Deshpande and colleagues' work that shows that in the nerve cells of fruit flies carrying a human gene linked to ALS, growth factor signals are sorted to the wrong compartment or "vesicle", and the vesicles carrying the signals move too rapidly. By tweaking the trafficking machinery, they could restore the growth signals and improve the crawling of fly larvae. The paper will be highlighted in the American Society for Cell Biology Newsletter. This work has also been covered by BrandeisNOW. The article can be found at link below...




Check out Dr. Rodal's lab website..




From the Desk of Dr. Carol Milligan...


Please read an update on the Hsp70  being conducted in the Milligan lab and how your donations are contributing to the future success in the WarOnALS. 
From the desk of Dr. Ron Zielke...

A recent update from the Director of the University of Maryland Brain and Tissue Bank... 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 1990's 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. 

This is a reprint from our last newsletter...ALS tissue is so important in the bench science for research...and this tissue is available to all ALS researchers worldwide!
 

From the Battlefields!

 






Jeff Galvin in Dublin!
Jeff Galvin's roll


  Jenny Hansen #179 at Couer d'Alene



Tom Frost #179 Chattanooga


Greg Voudrie at North Carolina


Hai-Ping at IMMD


Alan Wolfe at Couer d'Alene


Blazeman Warrior,Deb Saltz (left) at Vancover
Welcome Christy Blain...


Our newest Blazeman warrior hails from Texas. Christy contacted us after she was given #179 to wear at Vineman to honor her friend Harold who is living with ALS. She quickly became a Blazeman warrior making the commitment instantly...please join us in a warm welcome to Christy! 
 
Remembering Dr. Bob Meisterling...

His gift lives on...

 
On Tuesday, August 16th, Dr. Meisterling, father of Blazeman Warrior, Michael Meisterling, passed away. Bob had lived with ALS since 2008. The Blazeman Foundation was honored to assist his family through the process of donating his tissue to the University of Maryland's Brain and Tissue Bank. Bob's tissue, along with Jon's and many others is available to ALS researchers worldwide. Thank you also to this wonderful family for the countless donations raised in Bob's memory. We are very grateful for their support!
An ending that reminds us of someone...

Jon would day if someone else has said it better...use it! This note today reminded us of that. Thanks for the note, Sean!





Good morning Blaze Parents,

Just wanted to say thanks for the support and know Jon was with us at IM MD.  The day didn't go as well as planned with a torn soleus on the course.  However, throughout the return from heart surgery these past couple years and then through the day there was the #179 sticker and Mo Chuisle staring at me from the stem and in my head making sure I am ok looking like the fool for heading back to Ironman and ultras for the adventure of being alive :-)   What Jon wouldn't give to trade places and hang out in the hurt locker with us. It was a long slow slog but got it done in his name; nothing like a good beating.   So thanks again for keeping his memory alive and lets continue to hammer out ALS.  


I've come to battle.
So when the gun goes off...
Get off your couch.
Come bring what you got.
CAUSE...
I'll be looking for a good beating.

-blazeman

  Visit our website    Waronals.org


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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."