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|Greetings Blazeman Warriors
Summer has flown yet again...thinking back to 10 years ago this time when we were all in Kona for Jon's chance to compete in the World Championships as the first and still the only person with ALS to finish the race. Jon's niece Anna was only five months old. She is now in the 5th
grade. Anna knows only of Jon...a fact that he was well aware of and lamented about.
This year so many athletes have applied for Jon's Kona number 179 and some have chosen to fundraise for his foundation either directly or through the Ironman Foundation. Thank you to all that continue to honor Jon's memory. We know he continues to inspire others in the multisport community and appreciate all the notes we receive directly or through social media.
As I write this letter we are very close to the financial goal that was in Bob's mind when we took over the foundation after Jon passed away. Our funding started at Northwestern with the Blazeman Foundation for ALS Post Doc in ALS Research. All of our subsequent research projects are listed in detail on the BMF website under research.
Please take a few minutes and marvel at what grass root movements can accomplish. We are forever grateful for the support of everyone that has contributed.
Jon certainly played a huge role in creating awareness of ALS and the need to fund research. Today, thanks to our supporters and Blazeman Warriors we are on the threshold of making the financial goal Jon talked about. Once that is realized new goals will be set...until the final goal of an effective treatment is found. Thank you all!
Last but certainly not least; this year's recipient of #179 in Kona is Cheryl Iseberg. Cheryl is a former BMF board member who met Jon in 2006 and was a friend to Karen O'Riordan Kelly, our former BMF president who also passed away from ALS. More about Cheryl in the newsletter below. Please join us in wishing Cheryl a great race!
Mary Ann and Bob,
Jon's mom and dad
|Wearing #179 at Kona 2015
by Cheryl Iseberg
I started my Ironman journey ten years ago at IM CDA. I just turned 40 and was eight months post a diagnosis of MS. Today, I am now 14 Ironman races into this journey and over the last decade I have been lucky enough to meet some of the most amazing people and be a part of a movement called the WaronALS - Blazeman Foundation.
In 2006 as we volunteered in Kona, we got the chance to meet Jon Blais and I didn't know at the time that would set a course for becoming involved with the Foundation's board and meeting all the great people behind this movement.
I am lucky to be racing at the Ironman World Championships in Kona on October 10th and it's now time again to give back. This time in honor of Jon, Karen Kelly, and others who have lost their battle with this horrible disease but I will also race to make a small difference for those still challenged by it.
Jon always said life is not a dress rehearsal so here goes nothing for Kona!
To Jon, Karen, and others, thank you for all the memories you have given us, we have not forgotten and we continue to fight.
Blazeman Team Drea Visits Wake Forest
Andrea Peet's report from Dr. Milligan's Lab
In July, I had the privilege of visiting Dr. Carol Milligan's lab at Wake Forest University. Dr. Milligan (or Carol, as she insisted to be called) is a professor of Neurobiology and Director of the ALS Translational Science Unit at the Wake Forest School of Medicine.
Considering that Team D
|Dr. Carol Milligan
rea has raised more than
(!!!!!!!) for the Blazeman Foundation, I wanted to learn more about the specific research projectsso that I can talk more knowledgeably about them.
My husband, Dave ("DP") was in Brazil for a week on a work trip so I flew alone into Greensboro, NC and rented a car. It makes him crazy with worry when I do stuff like this, but I love it. Since I'm fortunate enough to still be driving, it's a break from being disabled - going as fast as everyone else, looking like everyone else.
When I arrived, Carol introduced me to her colleagues - including a fun surprise that her summer intern Melissa is a junior at Davidson College (DP and my alma mater!). Then she sat with me for more than two hours patiently explaining her research.
Keep in mind that I was a political science major (and, as we all know from watching the current presidential race, "science" is a loose term). With only a forced crash course in neurology over the last year, I understood about 10% of what she was telling me, which I know was only about 10% the depth of the material. So now, I will boil that down even further and attempt to convey 5 things that stuck with me in non-science-ese:
1) Research mice cost approximately $500 apiece for purchase, care and housing. When you think about needing 20 animals/group for an experiment, that's $10,000 just for the animals- seriously. Maybe you've heard that statistic that 5-10% of ALS cases are hereditary. Researchers use mice bred to have the SOD1 genetic mutation that causes ALS in families so they can test potential treatments and study their cells. It is therefore extremely important to assure the quality of the test mice so that no other genetic mutation or condition sneaks in to compromise the validity of their research. Thus, they are expensive.
[Several people have suggested a fundraising campaign to "sponsor" a mouse. The issue is with animal rights groups that are against using mice in research. Even though I believe in the sanctity of life (now more than ever!), I would debate them to the ends of the earth on this point. But that would be a distraction from the goal of finding a cure for ALS so I'll let it lie.]
2) C'mon Heat Shock! For the last 10+ years, one of Wake Forest's main ALS research projects has focused on a particular type of heat shock protein,
Hsp70. WF found that muscle cells stressed by ALS produce Hsp70 in an attempt to keep the motor neurons alive. The researchers then managed to treat ALS mice with additional Hsp70 and keep them alive longer.
Going forward, the next steps are to fortify the current studies with additional evidence, find the optimal dose of Hsp70, independently verify the results, and to submit the research to the FDA to move forward with clinical trials in people - phases 1, 2, and 3.
How long will that take?
It depends on funding. [And the FDA, but that's another story...]
3) Go Small to Go Big: One thing Carol emphasized to me repeatedly is how careful they have been in their studies to isolate the Hsp70 phenomenon at the cellular level and testing the treatment in the mice. They have to figure out how to "inject" Hsp70 in the right dose at the right place in the right way at the cellular level for this treatment to work...and then translate the results to humans.
4) Go Slow to Go Fast: The ice bucket challenge generated $220 million globally ($110M in the US) and with that comes pressure to demonstrate results. While it is
GREAT that lots of new trials are starting up (and enrolling lots of people who desperately need a cure), there is a danger in trying to go too fast...
Specifically, many of the patients enrolling have had symptoms for several years so their ALS may be too far advanced to benefit from treatment. Everyone hopes that is not the case, but if researchers aren't careful, they could dismiss a treatment as ineffective just because it was administered too late in the disease.
The WF process has been much slower - it has taken years (a decade+) to get to where they are now, but the science has so far been on their side. While the pALS side of me is
incredibly impatient for a cure and willing to sign onto any promising trial that will take me, I came away from this visit appreciating the thoroughness of WF's approach. ALS is a very complicated puzzle so we need to know what's happening at the cellular level to find the cause to find the cure.
5) Blazeman trusts Wake Forest because they failed. The first project the Blazeman Foundation funded involved different muscle fibers. Some fibers seemed more resilient than others so WF tried an intervention to make the failing fibers act more like the resilient ones. Eventually, they realized it wasn't working, but they took an unusual step:
they admitted defeat to the Blazeman Foundation. Carol said they could have finished the study and used up all the funding, but she knew that wouldn't be right. She said Bob Blais, Jon's dad, responded with something along the lines of "no one ever admits that!" then "What else are you working on that seems promising?" To which Carol said, "Well, let me tell you about Hsp70..."
In September, the Blazeman Foundation committed another $75,000 to continue the Hsp70 research over the next three years. Team Drea has raised $62,000 this year - I'm not saying we've single-handedly funded this research project (the f oundation supports work at four universities), but that gives you a sense of scale.
Here is the kicker:
Wake Forest is the only medical center engaged in researching this potential ALS treatment so without the Blazeman Foundation (and your donations), this promising research would not be happening.
Godspeed, Wake Forest!
Moving Forward with the Wake Forest ALS Research Lab
Our goal in this project is to conduct sufficient pre-clinical studies whose results, together with those already published will serve as the foundation for an investigational new drug (IND) application from the FDA. While there is no guarantee of FDA approval, we are proceeding with a reasonable expectation that approval will be granted when we can demonstrate efficacy in the mutant SOD1 ALS mouse model, no adverse effects and delivery to expected site of action. Other issues that may contribute to FDA approval are as follows. The protein to be used in treatment is an endogenously expressed protein in human subjects, therefore, significant adverse effects are not expected as might be observed with novel drugs or molecules not usually expressed.
Additionally, while we have not yet determined the specific half--life of the protein (see experiment 3 above), like all proteins, ours will be degraded and therefore have a limited time of exposure. If the IND application is approved, the basic science contributions to this project will lessen and the clinical expertise of Dr. Caress and the ALS Clinic will take on a greater role.
The ALS Clinic at Wake Forest participates in many NEALS--initiated clinical trials. As such, the collaborations are in place to help move forward for Hsp70 in a Phase 1 safety trial. If the FDA grants an IND for recombinant Hsc70, Drs. Milligan and Caress will be responsible for submitting grant applications to private foundations and NIH to initiate the Phase 1 clinical trial. We believe that positive results from gradual incremental steps of this project will ultimately provide a foundation for the necessary investment for full scale Phase 3 trial and market production.
Read more about this research study on our web site.
It's about Family
Family isn't always about blood. It's about people in your life that want you in theirs. People that come together for each other-no matter what.
For Blazeman Warrior Clay Leonard, that definition of family means bringing together hundreds and hundreds of people. His brother and sister. His fellow Louisianans. His fellow triathletes. And, sadly, the people who share a common bond with ALS.
Clay Leonard's father passed away from ALS over 24 years ago but, for him, it seems like it was only yesterday. In his later years, with ALS in the back of his mind, he watched the now-famous NBC broadcast and that forever changed his path.
The NBC story of Jon Blais inspired Clay to get involved and do a triathlon, to "race for something bigger than himself." Clay said, "I always wanted to do a triathlon and Jon's story inspired me on many levels."
So Clay trained and did his first triathlon. His races got longer, more frequent and ultimately he became an Ironman. Throughout that journey, Clay had a lot of time to think about what it means to race for something bigger than yourself. "There's a lot of time to think when you're on a 5 hour bike ride" he said.
So, for Clay, competing in races wasn't enough. He wanted to create a race and use it as a place to raise awareness and funds for ALS research. The Iron Horse Triathlon
was born. Clay ran the idea past his brother and sister who immediately got involved.
Now three years (and three races) later, Clay continues to
work tirelessly to grow his family of triathletes and friends toward the fourth annual Iron Horse Triathlon in Morgan City, Louisiana next summer. Based on the success of last year's event, the attendance this year nearly doubled to more than 250 participants from throughout the Southeast. "We could easily sell out to more than 400 racers next year, it's a great event."
You probably won't be surprised to learn than the race is what Clay calls a "family friendly event." He added, "I felt guilty at the end of the race relaxing and drinking sports drinks while my friends and family stood by. I wanted to create an event where everyone is welcome at the food tent. That's where family gathers." That's welcome news when you've been cheering in the hot Louisiana sun all day!
Proceeds from the
Iron Horse Triathlon
go to the Blazeman Foundation, which looks to raise awareness and funds for the treatment and cure of ALS. At the race, PALs (People with ALS) are honored for their courage and inspiration. Last year, the event honored Glenda McFarlain who was diagnosed with ALS, attended last year's event where she was honored by three competitors, Jay Duhon, J.D. Meche and Kevin Kennedy, who dedicated their races to her this past summer.
JD Meche, Ko Kennedy, Jay Duhon and Glenda McFarlain
Glenda's daughter, Kim Deibel and her husband, Stefan Diebel, of Tennessee attended the race last year to support Kim's mother. At some point during the day, Glenda asked Kim to compete in the race. Unfortunately, Glenda passed away and was not able to see her wish come true this past summer. But that didn't stop Kim and Stefan, who were determined to train for the race after seeing how Kim's mother lived each day as if it was a party and didn't consider ALS a "death sentence."
So Kim set out to train for her first race with her mother as her inspiration. Every time the training gets tough (and it gets tough when you're training for a triathlon) she thought "well, my mom dealt with this much pain every day and never lost her optimism and her shining personality. I can handle this." Kim often recalled the words of her mother's neurologist who encouraged Glenda to "go until you can't go any more". Those words pushed Kim to the finish line of this year's Iron Horse Tri. And it's those words that will push her again to her first 70.3 in 2016.
Kim's mother was the sixth person in their family to be diagnosed with ALS. Kim said she would love to meet a physician and offer to have him or her study their familial genetics, "but just don't tell me if I have ALS, she remarked."
While Kim had her struggles in her training, she said it went very well. "I will never be a professional triathlete, but she never asked me to win it. She just told me to do it." Something tells me we haven't seen the last of Kim.
Sometimes something positive comes from something negative. In this triathlon community every season, it's about
people that come together for each other, inspire each other, lean on each other and are simply there for each-no matter what.
Just like family.
Clay Leonard, Kim Diebel, Stefan Diebel, David Leonard and JD Meche at Iron Horse Tri 2015
From the Battlefields
Sometimes the best decisions come on the spur of the moment...For us, deciding to meet up with Blazeman Warrior, Debra Saltz, at a marathon in Coventry, Rhode Island was just that!
Blazeman Warrior, Debra Saltz (right), has been working toward her goal of running a marathon in all 50 states. We caught up with her this summer with her friend Melinda Peters in Coventry, Rhode Island.
Bdad, Debra and I post race!
Remembering Blazeman Warrior, Jacob Marquardt
A note to us from Jacob...
My dad, E. Thomas Marquardt, passed away on September 3rd after living with ALS since 2008. He was a gifted orthopedic surgeon and a member of many orthopedic societies. Jacob's dad had a passion for the outdoors second to none and was most passionate about fishing. Above all he took great pride in being a father and grandfather. His family was his world and he enjoyed thoroughly every minute he spent with us. He was diagnosed with ALS in 2008 and initially was given 12 to 16 months to live. However he decided that ALS was going to have to deal with a fighter and fight he did. For 8 years my father took everything ALS threw at him with incredible courage and figured out a way to make it tolerable. He required a ventilator in 2013 and continued to fight with the assistant of the ventilator. However in the last month of his life the pain became too great even for the strongest man I've ever known and he requested to remove the ventilator. He passed with his family by his side. I hope he can inspire all who have or know someone fighting with this disease as he has my family and me, because he is proof that even in the darkest of times and seemingly most hopeless of circumstance, there is always reason to fight and there is always a chance to find joy. -Jacob
Our thoughts and prayers are with you and your family...your dad has found his Freedom!
The Blazeman Foundation for ALS
welcomes Warrior Ann Bowen! Ann is a friend of Andrea Peet who has more friends than anyone we know!!!
The fundraising through the #179 program at the Ironman Foundation is really taking off! Shannon Neal #179 at IMFL has taken it up a notch with a BBQ fundraiser! Check it out...
Please visit Shannon's and other athlete's fundraising online
Thank you all and have a great race!
Sunday, September 27th brought us to the Westchester Tri for the 9th consecutive year. The BMF was happy to present MAC ANGELS with a donation supporting their community efforts. Our partnership continues. We also met up with some old friends at the race...
Thanks Jon Miles! Pictured in blue is Sarah who raced with our Jon in 2005 Ironman.
Blazeman Supporter Kim Townsend is planning a 5k in Evansville, Indiana on November 22nd. to benefit the Blazeman Foundation... more info to follow on our Facebook page and next NL! Thank you Kim!!!!!