The 7th Annual BUG RUN was held on March 30th, 2019. The temperature at race time was 34 degrees and it was snowing (But it was better than rain).
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For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
At every event Jadon’s Hope has hosted, we honor SMA kiddos from across the country. These kids are the entire reason we do anything and everything we do as a foundation. We feel it is incredibly important for our supporters to know who they are fighting for. Simple cards showing bright, smiling faces that highlight very complex lives. Faces of our courageous Warriors and Angels.
As we get caught up in event planning, inevitably these cards are put off until the last moment and it begins to feel like a task that simply needs completion. However, the “burden of completing the task” is always overtaken by the honor of the fight.
There always seems to be that moment. That moment when the work disappears and the shining faces touch our souls. Suddenly, we understand that we are lucky to know these kids, to understand these kids, and so very lucky to fight for these kids. We fight to make a better world for those fighting SMA and to one day see a world where SMA does not exist.
That moment often triggers the waterworks. This year, the sweaty eyes were uncontrollable when one particular card was created. Brianna has been a smiling warrior for each of our events. We met Brianna on Facebook shortly after Jadon’s diagnosis and she was always a great source of information and overwhelming inspiration. We were blessed to meet Brianna in person while in Madison WI over two years ago. Living close to Madison, Brianna and her family would often travel there to meet SMA families who traveled to see SMA specialist Dr. Schroth. When she learned we would be there for Jadon’s trach surgery, she insisted upon coming to the hospital to meet him. Brianna was a spitfire and seeing her Facebook posts, her smiling face and constant words of encouragement were a gentle reminder of who we should strive to be.
Brianna’s title changed from Warrior to Angel on January 13th of this year. She finished her race against SMA here on earth and flew home to be with her creator. The task of typing Angel beside her name was too much to hold back the emotions. As SMA parents we know without a cure, that inevitable day will come, but we try not to think about it. Let me tell you, it doesn’t work. Brianna lived on this earth for 15 years and showed us all how to live and love. She reminded us that all it takes is one to make a difference in the lives of so many. She reminded us that life lessons are NOT always taught by adults. She showed us how to Dance in the Rain and she will never be forgotten.
We will continue to run in her honor.
On April 5th 2014 nearly 600 people gathered on a frigid day in Olathe to take a stand against Spinal Muscular Atrophy (SMA). Planning of The Second Annual BUG RUN began exactly 363 days earlier. The groups of volunteers that have worked on the BUG RUN for the last year have been nothing short of amazing. We would not be able to fit an adequate number of Thank Yous in this blog. We are completely blown away on a regular basis by those around us and their dedication to the fight against SMA.
The BUG RUN race director Amy Vrban does an amazing job getting (and keeping) everything in order. She has a spectacular group of people who each do their part perfectly. Big giant thank yous to Cathy, Jennifer, Melissa, Melissa, Katie, Andrea, John, Lori, Jennifer, Suzie, Michelle, Joanne, Leslie, Allison, and Julie. Beyond this core we had close to 150 volunteers the day of the race as well as so many people simply spreading the word. THANK YOU.
We couldn’t hold the event if it wasn’t for our amazing sponsors, many of whom were sponsors for the second year in a row. Thank You so much.
The goal was to make this year better, and hopefully bigger. Both goals were substantially surpassed. Our emcee, Patrick Fazio of 41 Action News and Kristin kept the crowd engaged with commentary and SMA trivia leading up to the start of the race.
Kristin Burks, Patrick Fazio, and Amy Vrban
The big surprise for Kristin and I came when Olathe Mayor Mike Copeland presented a proclamation that the day would be known as Jadon’s Hope Day. I could barely keep my emotions off my cheek when I thought of the city recognizing the disease as well as the foundation. You can’t cry in front of the Mayor!
Mayor Mike Copeland presenting a proclamation.
Michelle Boucher singing the National Anthem.
The National Anthem was amazing.
61 balloons for 61 angels.
61 balloons were released in honor of the 61 angels that gained their wings in the year since the last BUG RUN. This portion of the day was extremely emotional for us as we thought of those 61 families who go to bed at night wishing they had just one more day with their little ones. These are kiddos whose stories we have followed, some we have met personally, but all have touched our hearts. There are so many others who don’t even know about because they don’t make a connection and possibly don’t have the support they desire. We want every family who wants help to get it. We want every family who has lost a child to know they WILL NOT be forgotten.
“I RUN IN HONOR OF” stickers.
This year runners had the option of running for an SMA child. They simply chose a sticker from 60 SMA warriors/angels. The runners dedicated their run to these kiddos from across the country. One of the SMA kids who was being run for received the medal his runner won at the race. How amazing is that?
Custom shirts, bibs, and medals
Top 3 runners!
Bill Allen
1st Place
Ricardo Medellin 2nd Place
Hadley Cornish
3rd Place
CLICK HERE FOR COMPLETE LIST OF RESULTS
The Bitty BUG RUN
Kids under 5 run in the Bitty BUG RUN. Do you know who won?
WE ALL DID…because their all so darn cute!
Kids helping kids will pull at our heart strings every single time.
It was truly an amazing day and we are blessed to live in a community that is willing to stand beside us, put on a cape and fight this horrible disease. SMA is hard, very hard, but to feel the love that surrounds us makes the fight seem a little easier. It is that feeling that we want to pass on to other SMA families, that feeling of inclusion. That inclusion may be what some families need just to fight one more day, and then another, and then another.
We will see you you next year for ANOTHER BUG RUN!!!!!!
Mark your calendar- APRIL 4th 2015
Three strong SMA Mommas.
Pictures courtesy of Jeff Lentz. Thank you Jeff!
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