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Blazeman Warriors keeps growing! We are proud to have you representing us on the battlefields!
|Happy New Year
to our Friends and Supporters!
Mary Ann and Bob,
As we approach another new year with hope that 2016 is the year an effective treatment for ALS is discovered and at the same time think back to 2005 when Jon was diagnosed, we certainly have accumulated a lot of memories...good and bad. This year, 2015, had a great deal of meaning to us; it was 10 years since we first sat on the wall in Kona waiting for Jon to finish and become the first and still only athlete with ALS to complete an Ironman, putting a face on ALS and making #179 a very special number indeed. Such a bittersweet day...
We have a lot of people to thank; the ones that stepped up and committed themselves to being a part of Team Blazeman. Bob and I have said so many times that for the most part it has been the "kindness of strangers" that have made Jon's foundation successful. By that, we mean people who were not part of our lives before Jon's diagnosis. The sad part of this story is the ones that disappeared...it happens a lot with ALS.
This year, thanks to many who hosted a cycle event last February and March we grew our research accounts. Thank you all again! Early April,
Kelly Burns Gallagher ran another successful Greater Hartford ¼ Marathon with the BMF as the charity of record. In June,
Barry Sopinsky's Death Tour ride granted us a very generous donation. Also in June,
David and Clay Leonard honored us again by choosing the BMF as their charity for the very successful
IronHorse Triathlon. Joe Goddard worked with us, Al Lamothe and TRIMOM to put on a race in Rhode Island at Aldrich Mansion and over the summer Ironman® through the
Ironman Foundation set up a program to allow athletes to apply for #179 and raise funds for the BMF...the response was tremendous!
In late October many athletes participated in the
Miami 70.3 again this year by purchasing a blazeman slot. A huge thank you to race director,
Wilber Anderson, for continuing to support Jon's mission! New this year just before Thanksgiving, was the
Barb Raben 5K in Indiana organized by
Kim Townsend. This race honored the memory of her friend Barb Raben who passed away from ALS and Jon's foundation was the charity to benefit from the proceeds. Thank you Kim!
Last, but by far, not least, the scores of donations raised by our supporters and also
Team Drea athletes in honor of pALS,
Andrea Peet. Andrea has created a team of warriors exactly the way Jon visioned. Many thanks to each and everyone that made a donation to the Blazeman Foundation...we are forever grateful!
Bob and I take very seriously our responsibility to safeguard donations made to the foundation. Our overhead is minimal and we know how important it is to make every donation count. On that note, we also thank
Elizabeth Farnan. "E", as she affectionally is called has donated her time year after year, submitting our 990 which is vital part of any non profit.
We are truly blessed.
Happy New Year to you all!
Jon's mom and dad
|Remembering Nancy Sterling...
Nancy was a friend of the Blazeman Foundation for ALS since early in her disease. Nancy's sister, Kathy, notified us of her passing on November 11th.She is another athlete that lived with ALS...RIP Nancy.
Kathy wrote this piece for us to put in the newsletter:
Nancy Sterling's 8-year struggle with ALS ended on November 11, at the age of 60. A former championship swimmer (age-group through Masters), award-winning Weight Watchers group leader, and member of internationally-ranked Sweet Adelines choruses and quartets, Nancy's positive attitude and creative mind contributed to her being able to maintain, to a great degree, her quality of life and longevity with the disease. Never one to ask, "Why me?" Nancy's question was, "OK, Lord, you've given me this thing, now what do you want me to do with it?" The answer follows.
Nancy's 30-year career as a physical therapist was a mixed blessing. She knew exactly what was happening to her and what was to come. At the same time, she knew how to coach others to perform her vital range-of motion exercises and position her to make her comfortable. She knew what equipment she'd need and was able to procure it with the help of various grants. Always eager to help others, she even acted as a living "training aid" for Physical Therapy students until that effort became too tiring.
In 2006, just before showing the first symptoms, Nancy brought home 13 medals--6 gold!-- from the YMCA Masters championships (photo below). She finished the 2 events she entered in her last Masters championship in 2008, having only arm strength to carry her through the water. The pool was ringed with cheering supporters. When she could no longer swim or speak, she turned her attention to mentoring and encouraging others in their aquatic pursuits, counseling a high school teammate's daughter and coaching her non-swimmer nephew long-distance on open-water swimming so he could enter a fund-raising triathlon. All this encouragement was accomplished with the aid of her DynaVox communication device, which she eventually operated using only her eye gaze.
Leading a Weight Watchers group, of course, requires speech and some physical dexterity. With her trademark humor, Nancy asked a group member each week "Who wants to be Vanna?", and got a volunteer to turn the pages on the flip chart that another leader had created. When she had to leave the group when speech failed, Nancy continued coaching various people on the program, still feeling connected to the overall program and delighting in everyone's success. Nancy was featured in a Prevention magazine article in 2009 about her 75-pound weight loss. The photo shoot was in late 2008, when her legs were significantly weakened.
Competing in the 2008 Sweet Adelines International competition in Calgary, Canada, Nancy mounted the risers with undetectable help from her friends, stood with legs locked, supported by the safety bar on the back row, performing all the upper-body choreography required by the program. After placing 2nd with her chorus, Nancy retired another beloved hobby. Not to be denied, however, she formed a quartet from four friends in her local chorus and has coached them with the DynaVox. That was amazing to watch.
Nancy Sterling was my baby sister. The nephew she coached in swimming is my son, Bryan, who lives in Austin, Texas. Bryan does the Blazeman Roll at the end of the triathlon started by Nancy's swim team buddies. I've never been prouder of either of them. In 2016, Bryan and his wife will compete in Nancy's honor. ALS took a lot from Nancy, but she found ways to continue doing what she loved and to continue to be a contributing member of her community. Her words to everyone: "You can DO it!".
The Ultimate Gift
Jon had always listed that he wanted to be an organ donor, so when his ALS diagnosis came and normal organ donation was not an option, tissue donation was a no brainer for him. ALS tissue is sorely needed to understand and study this horrific disease. After Jon passed away the BMF collaborated with Dr. Ron Zielke at the NICHD where Jon's tissue has been made available to ALS researchers worldwide
Dr. Ronald Zielke
Please share this gift...
In 2011, The Blazeman Foundation for ALS and the NICHD Brain and Tissue Bank joined efforts to speed research on ALS (Amyotrophic Lateral Sclerosis, commonly referred to as Lou Gehrig's disease).
The study of post-mortem tissue from individuals with ALS is critical to finding the cause of ALS. If you have decided to become a potential tissue donor, you are encouraged to register with the NICHD Brain and Tissue Bank. Preregistration allows for speedy recovery of tissue. Time is critical for the recovery of tissue and should be completed within 24 hours after death.
More information and how to register is available on the University of Maryland
. We have created a
explaining the program.
From the Battlefields
Barb Raben Memorial 5K
Last summer, Kim Townsend,
age group triathlete and runner, contacted us about organizing a 5k in memory of her friend Barb Raben with the proceeds coming to the Blazeman Foundation. The race was held successfully on the Sunday before Thanksgiving in Evansville, Indiana. This first time race was a tremendous success that brought out many family and friends that not only participated but supplied all the food for the race. A special thank you goes out to the race sponsor, Raben Tire!
Greater Hartford 1/4 Marathon
2016 will be the 10th anniversary of this consistently sold out race! The BMF will be the beneficiary again in 2016...thanks Kelly and the Greater Hartford Track Club!
In October, the Miami 70.3 remembered
Jon and his spirit was certainly present
My thoughts that day...
"Today, Jon "Blazeman" Blais lived in the hearts and mind of the Blazeman Warriors at the Miami 70.3. Claudio Navas, Peter McDonough and world champ Leanda Cave as they raced and rolled the finish line. We wish we could have been there to greet and hug you all. Thank you for coming into our lives and remembering the blazeman who in 2005 went to Kona to put a face on ALS. He did that with his failing body taking strength from all the pALS that he promised he would finish. You have carried the torch today...
Thank you also to Wilber Andersen and his great team for continuing to support Jon and his foundation"
The Blazeman Foundation for ALS is now a charity on Amazon Smiles.
Help support the BMF when shopping on Amazon. If you shop on Amazon, you can direct that .5% of what you spend goes to a charity. If you go to
smile.amazon.com, it will allow you to search for a charity. Type in "Blazeman" and it will come up. Select it and shop!
From Blazeman Warrior, Katharine Posner
I've never written in before - especially as I only became a Blazeman Warrior in 2014 to honor my father, Edward Posner, and his fight with ALS. I was proud to wear the Blazeman colors on the East Coast, and then later
on the West Coast after moving to California in Aug
14. I was preparing to do a full slate of races in 2015 wearing the Blazeman colors, when I was diagnosed with Breast C
ancer in January 2015. My father came to California for every chemo treatment, surgery and doctor appointment after my diagnosis. He did not let his ALS stop him from being at my side through it all and pushing me to keep fighting.
Despite just recently finishing radiation and still going through treatment, I got the okay from my doctors to start the 2015 Pumpkinman Tri in Boulder City, NV.
I've watched my father deal with his diagnosis and keep both his head and his spirits up. He fights hard in his own way and his spirit, and that of my mother, pushed me through the event. I was thrilled to actually finish the race - complete with log roll across the finish line. I am hoping that I will be able to complete many more races wearing the Blazeman colors starting again in 2016.
Welcome to the world, Esme Grace Lowe, born on December 12th to Chrissie Wellington and Tom Lowe!
Chrissie has not only been a great supporter of the BMF throughout her career but also a wonderful friend. We wish Chrissie and Tom along with Lin and Steve Wellington (grandparents) a lifetime of joy with this beautiful child!
Thank you Chrissie, Tom, Lin and Steve for including us every year in Kona at the Welly Party!
Chrissie and the signed Brooks War on ALS running shoe.
Thanks for the memories Chrissie-you have embarked on your most important role in life
as a mom.
Last, but not least...what started our journey 10 and1/2 years ago...Competitor #179, Jon Blais...the best son parents could ask for...
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.
A big welcome to you and we hope to see you at a race this year... please visit our
website and start communicating with other warriors and supporters.