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!
The BUG RUN was held on April 7th 2018. This was the 6th annual race by Jadon’s Hope Foundation.
More pictures here:
Race results here:
For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE
Whenever we suffer a loss in our SMA family, it is hard. And each one has its own affect on us. We reside in a world that we wish with every fiber of our being didn’t exist. A world where little ones become angels far too soon and parents have to say good-bye to their precious babies. But this one, this one just crushed us. Gwendolyn is very special to us as are Bill, Victoria and little sis, Eleanora. Over the years and despite the many miles that separate us, an amazing bond, connection, friendship has grown. We have celebrated with each other, worried and cried with each other, laughed with each other, lifted each other up, helped each other out and leaned on each other. We have just been there for each other.
And Jadon and Gwendolyn? Well, they were boyfriend and girlfriend. Whenever Bug saw a picture of Miss G his eyes would get as big as saucers, he would purse his little lips and get major “happy belly.” And when Miss G saw Jadon, she would bat those gorgeous long lashes and tap, tap, tap her finger. He was her blue-eyed boyfriend and she was his fabulous Miss G. Everywhere you look in Jadon’s bedroom, there is something from Gwendolyn. Multiple pics that adorn his shelves. The turtle she gave him years ago that to this day he insists is turned on at night. The blanket that he loves to have his feet snuggled up in. Valentine’s Day cards she made him. Treasures she picked out for him during trips to Disney. Pout-Pout Fish books. Tickle Monster book. She is there.
Whenever we would go out on adventures and Jadon got a souvenir, he insisted that Miss G would get one too. Always something blue for him. Purple for her. Early in their “courtship”, Jadon found out that a little boy had given Miss G a flower while at a playground. That simply wouldn’t do and he made sure Miss G had an even bigger purple flower from him.
To profess his love for Miss G, Jadon even got a little ink.
And it worked!
Earlier this year, I was blessed to be able to spend some time with Bill, Victoria, Gwendolyn and Eleanora when I traveled out to California for business. It was magical – a moment when you hoped time would just stand still. And as the sun began to set and night fell, I didn’t want the evening to end. I wanted to soak up every second because I didn’t know the next time we would see each other again. When we finally had to say our good-byes, I raced to my room to call Tony. I told him we HAD to figure out a way for all of us to get together. For Jadon and Gwendolyn to meet. Unfortunately, that never happened. Just one more thing SMA has robbed from our kiddos.
When Bill called early Saturday morning, our hearts shattered into a million pieces. The wind knocked out of us. How could this be possible? My knees buckled as I crumbled into a heap onto the floor. This is NOT supposed to be happening. It simply wasn’t fair.
Ever since Jadon was little, he would randomly look into the corners of the room and jabber/chat. We firmly believe he is talking to his angels watching over him. Throughout the rest of the day on Saturday, we struggled with how to tell Jadon about his fabulous Miss G. We desperately fought off tears anytime we were face-to-face with him. As we got him settled in his room to begin nighttime treatments, we finally mustered up enough courage. We told him we had some very sad news to share. He looked at us very seriously and with his eyes said “Yes.” We said, it’s about Miss G. Again “Yes.” We asked him, do you already know? This time BIG, BIG “Yes.” We asked, have you been talking to Miss G? Another BIG, BIG “Yes.” He had been chatting earlier in his room during his chill-time. We should have known he already had a very special visitor come by to let him know she was okay and would be watching over him. Even now these two have an incredible bond that will always be there. We take some comfort knowing that the fabulous Miss G is continuing to watch over him and be with him.
The world was a better place with Gwendolyn Strong in it.
The world is a better place because she lived.
We are better because of Gwendolyn’s life and we will always carry a part of Miss G with us.
We will Never Give Up.
We are… G-STRONG.
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!!
WRITTEN BY AMY VRBAN
Race Director – Jadon’s Hope BUG RUN
I have greatly enjoyed seeing everyone’s pictures from the Bug Run yesterday! It helps me see all I miss and see the enjoyment that was truly had at this event! I was overcome with great emotion at several moments. Moments I could talk about all day, moments I will never forget, and some so powerful no words are required.
SMA. I never knew how much those 3 little letters would impact a life. In return the impact that life would have on an entire community. Jadon. I was asked 4 times yesterday why I think Jadon has surpassed life expectancy. I don’t have the answer. Certainly not medically. What I see is a beautiful child who teaches us to love one another, encourages us to come together and help each other. To help each other beyond our own friendship and boundaries. Jadon has brought a community together to fight for all childhood diseases. He shows us how to live without giving up hope and beyond limits. To live each day and be thankful for it. Because of Jadon new friendships and bonds have been made. More and more people everyday are seeing the effects of SMA and ways they can help a devastating, terminal disease, come to an end. Jadon’s hope. His parent’s hope. His family’s hope. My hope. Friend’s hope, our committee’s hope, the community’s hope, hope across the country, hope around the world. It’s spreading and everyone can help!
Jadon’s parents have an endless love and passion for their children which has spread into the Foundation. Inspiring and infectious. Their kindness, love, passion, and dedication will touch your heart and soul.
I am thankful for every single person who registered and gave their money to such a wonderful cause! I am thankful for the silent donations and those who continually want to give! Thank you to all our sponsors who are new and have given to the Bug Run for the 3rd year! We couldn’t do it without you! It’s overwhelming to say the least. People helping other people!
Spreading HOPE and awareness! I am blessed to have a wonderful committee who share the same passion! They are an amazing group of people who work so hard in different areas and in different ways but they all give all they have.
Every single volunteer! Over 150 volunteers came out to help and gave their time to help make this, a fun, safe, and enjoyable event. Thank you!
Pictures from the event will be posted in the next couple of days and I’ll keep you posted on that!
We look forward to the 4th annual Bug Run in 2016! Fun things are already being planned!
Look for us in the Old’s Settler’s Day parade in September! We’ll have the Bug Run date set! Please visit http://jadonshope.org to keep up with the latest news and happenings with Jadon and the Foundation!
In the mean time keep hope alive, keep fighting and running!
And remember; when your legs get tired, run with your heart!
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.
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!
The National Anthem was amazing.
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?
Top 3 runners!
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