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).
Each and every year we are blown away by the amount of support we have for the BUG RUN. It truly warms our hearts to see people jumping on board to support our SMA community and our little hero, Jadon “The BUG” Burks. However, this year’s race was nearly the race that wasn’t. With a winter storm in the forecast (IT”S SPRING!!! Buuuuuuut) the city needed to make a decision on our race.
Within the window of uncertainty we couldn’t help but think of all the hard work that went into a day that potentially wouldn’t happen. We couldn’t help but think of those who were planning to run their first race, and those who would “run for” an individual with SMA. We couldn’t help but think of all the many volunteers that set that day aside to help spread SMA awareness. The hardest part was considering the fact that our committee had worked ALL YEAR for a race that might not happen. Planning for the BUG RUN starts nearly a year in advance. (We have already had a meeting for next year’s race.)
Our committee is completely incredible. Our “Amazing Race Director” (That’s now her official title) Amy Vrban keeps us all organized and everyone does their part with such dedication and enthusiasm. We are truly humbled.
We want to give a big THANK YOU to our incredible committee
It was futile to think we could control the weather, but we could pray, and that’s what we did. The forecast began to change and the 90% chance of possibly 3” of snow became a 5% chance of a trace of snow.
THE RACE WAS ON!
IT WAS COLD!
IT WAS REALLY REALLY COLD!
Did we mention that it was COLD?
BUT IT WAS DRY.
The week leading up to the race was possibly more stressful than other years, but possibly it was even more rewarding. We were relieved to simply have the event.
Despite the cold, the racers showed up to race.
DJ Ty was there to spin some tunes and help us keep things moving.
The kids showed up to sing the national anthem.
The city was there to keep us safe and we had ourselves a BUG RUN.
We hope the 6th annual BUG RUN will be the coldest we ever have and we hope it never rains but the only forecast we can be sure of is this: If there is a BUG RUN, there is good in the world.
THANK YOU ALL SO MUCH.
SEE YOU NEXT YEAR AT THE 7TH ANNUAL BUG RUN!
For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
The 2015 BUG RUN was held on April 11th. We continue to be amazed at the turnout as well as with the overall atmosphere of the event. The BUG RUN has become a gathering of the community and the support is nothing short of overwhelming. From all of our sponsors to all of those who participate, the love for Jadon and the fight against SMA is evident. Acts of kindness abound and one small example is the fact that all of Jadon’s Kindergarten class registered for the run. An anonymous donor paid for those who would not otherwise been able to attend. It is because of gestures like this that we are constantly talking about how blessed we are with those who God has chosen to surround us with.
We are already looking forward to next years run and looking for ways to make it even bigger and better.
SEE YOU NEXT YEAR!!
On Saturday, September 7th, Jadon’s Hope Foundation entered a float into the Old Settlers Parade here in Olathe Kansas. The parade boasts that it is the largest in Kansas with over 70,000 attendees. We felt it would be a great way to spread awareness for Spinal Muscular Atrophy (SMA). 1 in 40 people carry the gene that causes the #1 genetic killer of kids under 2. If the attendance met the expectations there were statistically 1,750 carriers in the crowd. Most of those carriers have likely never heard of the disease that takes the lives of 90% of those affected before they celebrate their second birthday.
We decided the theme for the float would be based on the phrase that has become our battle cry.
“Life is not about waiting for the storms to pass, it is about learning to dance in the rain.”
With a storm like SMA it would be easy to feel sorry for ourselves, it would be SO much easier to never leave the comforts of our home. With so much equipment it is always nice to have electricity just an extension cord away. It would be easier to let the storm pass us by but we prefer to do things, anything to escape our SMA reality. Anything to simply live life.
As Saturday approached, the forecast temperature continued to rise and by Friday night they predicted a humid 94 degree day. We thought of pulling our 3 honored warriors off the float but then that just would not be “Dancing in the Rain”.
Saturday morning was warm but a breeze as sweet as angel’s breath (SMA angels perhaps) kept everyone cool. We loaded the float with Cody and Hunter Edwards (SMA type2) up front and Jadon aka “The BUG” (SMA type1) positioned (unintentionally) under… the bug.
It was an emotional ride to say the least. Portions of the crowd would cheer when they saw the boys. There were many “Jadon’s Hope BUG RUN” shirts in the crowd and we overheard several people say “Is he on there? Oh there he is. HEY BUG!!”
As if that wasn’t emotional enough I looked behind the float and saw all of Jadon’s friends walking. They were handing out awareness and dancing with their umbrellas. Kids helping kids is such a powerful image.
It was another one of those amazing days where I worry about how it will turn out and then end up being blown away by the power of the situation. Blown away by the power of God working in our lives.
A big giant tremendously HUGE Thank You to everyone involved. Thank You Cody & Hunter for joining us. Thank you to those who helped with assembly, drove the truck and loaned the trailer, helped with materials, walked, spread the word, and cheered. You guys are all so amazing.
We definitely “Danced in the Rain”.
To find out more about SMA visit our website: JadonsHope.org