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).
It was our intention to give away 20 of these amazing swings but with over 80 responses we felt inclined to add another 10. SO WE ARE GIVING AWAY 30 SWINGS! We sure wish we could give one to everyone.
Entries were taken from a link posted on Facebook and then recipients were chosen randomly using Random.org.
The 30 recipients are below.
As witnesses to the degenerative cruelty of Spinal Muscular Atrophy (SMA), we founded Jadon’s Hope Foundation (JHF) in honor of our son Jadon (aka “The BUG”.) Jadon was diagnosed with SMA at two months of age and we will celebrate his 9th birthday on June 25, 2018. JHF’s mission is to promote SMA awareness, fund research efforts and support families just like you that are impacted by and fighting this cruel disease. Shortly following his diagnosis, we were given the phrase “Life isn’t about waiting for the storms to pass, It’s about learning to dance in the rain.” This has become our mantra. Our battle cry. And we hope others facing the raging storm that is SMA will also learn to “Dance in the Rain.”
Jadon’s Hope Foundation is 100% volunteer based, so all fundraising efforts go towards supporting our mission and funding the many programs we are honored to be a part of. Since Jadon’s diagnosis, we are proud of the opportunities we have been involved in to support the SMA community:
- Over $50,000 donated to help fund gene therapy research
- Funding support partner for the Gwendolyn Strong Foundation “Project Mariposa”
- Purchasing 35+ pieces of adaptive equipment for the Cure SMA equipment closet
- Funding twenty Angel Arm wishes through Jacey’s Journey
- Providing medical supplies to SMA families
- Funding gift cards to SMA Medical Supply
- Partnering with Getty Owl Foundation in 2016 to provide 20 platform swings
- Funding projects to make homes and vehicles accessible for use
- Granting fluidized positioners through JHF “Snug as a Bug” program
- Granting 5 customized high-raised beds through JHF “Bed of Hope” program
- Helping fund doctor/medical specialist visits
- Providing financial support for Celebration of Life services as families say good-bye to their precious ones
We invite you to learn more about JHF at http://www.JadonsHope.org. Make sure you keep up with foundation updates by Liking our Facebook page – Jadon’s Hope Foundation. Please post pictures of you using your new swing to our Facebook page; our supporters love to see all of Jadon’s amazing warrior friends! If you have any questions, please feel free to contact us directly at email@example.com.
Again, congratulations on to our 2018 Summer Swingin’ program recipients!
Not Pictured – Jericho Chadsey
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:
From Race Director – Amy Vrban
We can’t thank our Jadon’s Hope BUG RUN volunteers and participants and the City of Olathe, enough for coming out yesterday morning and braving the cold! You indeed warmed our hearts!! Even though it wasn’t the weather we were hoping for, you were there running for, supporting, and cheering for those who can’t! Helping us spread hope and awareness about SMA! Fighting for children with a terminal disease.
💙You danced in the rain.💙 THANK YOU!!
It’s truly a gift to be a part of someone’s life and journey. To be inspired by that person. To share hopes and goals. Not only wanting to help and love that person but, also encourage others to do the same. Setting out to be helpful and to do all I can to be helpful in same way. However, along the way, that one little person has changed everything. In the most unexpected and amazing way!!
Jadon Burks has not ever communicated verbally one word with us. Yet, this amazing child has brought an entire community together! He has taught us inclusion, acceptance, and to dance in the rain. Fight the storms in our life. Hope.
He has, in turn, helped us instead! 💙
I am blessed to be friends with the entire Burks family. They have taught me what is important in life. We have one chance at life, make the most out of your everyday!!
Kristin, Tony, Jadon, and Gracyn have greatly had an affect on many of us! God has placed so many amazing people in our lives. I get a lot of credit for the Bug Run. It’s not just me. It’s the amazing people surrounding me, keeping me going and encouraging me along the way and doing an amazing amount of work throughout the year. They are my friends and are just as passionate and involved as I am. They put in an endless amount of time and heart. Working on details, ways to improve the race, to make it better every year! Jennifer, Heather, Michelle, Cathy, Holly, Kristen, Joanne, Melissa, Tiffany, Lesley, Meghan, Melissa H, Kristin, and Tony.
THANK YOU!!!! You make the Bug Run an amazing event!
We are blessed to partner with Rolling Ridge Elementary!!! What an amazing school that has embraced and tackled the Bug Run from the beginning in 2013. Who else would let us move an entire event inside the building to protect everyone from the cold air as long as possible and make it more enjoyable?!! Thank you John Ernst for your support!
My family and my parents (Sondra and Larry)!!!!💙 Thank you for always being right there and supporting us along the way!! Sharing in the passion, ready to help and join in!💙
Here are a few pictures I’d like to share from the day. I appreciate everyone fore sharing them!!
Please feel free to share more of yours! We enjoy seeing them and are always looking for pictures for our videos!! 😊
We look forward to the 7th Annual Jadon’s Hope BUG RUN!! We hope you join us next April 2019!! Continue to fight, hope, and dance in the rain!! 👊🏻💙☔️
Christmas, it truly is the most wonderful time of the year.
It was a wonderful year for us and also for the SMA community as a whole.
Christmas can be an emotional time for SMA families. It’s one of the biggest milestones each year. It can be the highest of highs and the lowest of lows, sometimes within the same day.
This year we celebrated Jadon’s 8th Christmas and his 7 ½ year birthday. It’s kind of cool having a half birthday on Christmas day. Both of these far surpass the numbers stated with the SMA prognosis we were given with his diagnosis. In fact they told us not to plan on more than one of each. Therefore, you can imagine how blessed we feel each and every year.
Inevitably, when we are taking down the decorations, we wonder if it was his last. It’s hard to imagine a Christmas without our little Super BUG. We always try and live in “the now” but sometimes fear just has a way of sneaking up on us.
We know far too well how blessed we are to have Jadon celebrate his 8th Christmas. We owe it all to the protocols of his SMA specialist, Dr. Schroth. We started her protocol when Jadon was just 4 months old. This keeps his respiratory strong enough to not just live, but live a life worth living… To “Dance in the Rain of this Life Storm.” We have always wanted Jadon to get out and experience as much as possible. We are forced to constantly weigh out what truly is possible.
Jadon’s entire life has been a balance of risk vs potential reward. Jadon goes to school for only part of the year because in Cold & Flu season the risk far outweighs the potential reward. He does get to facetime with his class twice each day.
We struggle each year with exactly what day to pull him out and what day to send him back. We shoot for Halloween each Fall so he can partake in all the holiday festivities and the reward is tremendous. Dressing up and just being “one of the kids” is one of his best days of the year.
Each and every outing gets weighed out in our minds before we step out of the house. A hot baseball game, a walk on a cool day, going out in public during winter months, these things are fun for him, but how fun? How much risk? Could the trip turn deadly (literally)? We have gotten out this year more than any other year of his life, it was a great year.
As we were preparing to soak up every second of Jadon’s miraculous 8th Christmas, there was an announcement about to be made that will drastically change Christmas for every future SMA diagnosis.
On December 23, 2016 a miracle was announced.
The FDA approved the first ever treatment for Spinal Muscular Atrophy (SMA). The drug is named Spinraza and it is a treatment not a cure. A “cure” would be a ONE TIME application that eliminates the disease. A patient receiving Spinraza will need six lumbar injections the first year and 3 injections every year for the rest of their lives.
BUT IT WORKS!!!!
IT REALLY, REALLY WORKS!!!
The drug had been in trial previous to the FDA approval and some of the Type1 children starting their dosings at a very young age are now walking. Below is a picture of Jadon’s buddies, Mateo & Javier, two amazing brothers who both have SMA Type1 just like Jadon. Javier has been getting Spinraza since he was only 12 days old.
Let the water works flow as a true miracle is witnessed.
This is what we have prayed for ever since we were so rudely introduced to SMA back in 2009. We have been told year in and year out that a viable treatment/cure was on the horizon but now IT’S REALLY HERE!
We are overflowing with joy.
We truly wish that joy was the only feelings that came with this announcement.
As we have expected from any potential treatment or cure, Spinraza halts the progression of the disease. The deeper the progression the less impact any treatment will likely make. The less any improvements may actually be noticed.
So what does that mean for Jadon? It is very uncertain. Jadon had lost most of his movement by the age of two. Only his feet and fingers retained VERY limited mobility at that point, but we haven’t seen movement of any kind, not even the slightest little foot twitch for over a year.
So we are back to weighing risk vs potential reward.
With the impact of this drug likely being minimal what kind of risk are we willing to take to receive it? This is the unfair struggle we are faced with.
All things are relevant and for Jadon we would be ecstatic if he could regain movement in his fingers to enable him to use switches and possibly communicate. A child who can only lay flat would be happy to sit. One who can sit would like to stand, and someone standing would of course want to walk. If we felt this drug would make Jadon walk you would not be able to keep us from attaining it.
This is one of the most heart wrenching decisions we have had to make yet.
We are not only disappointed that this didn’t come sooner for Jadon, we are disappointment for the kiddos who just missed being helped by this miracle drug. Those kiddos who were stronger than Jadon but passed away within the last two years. Those children who passed away this year who were younger than a year old could have been helped the most.
Why are young kids still passing away? Because even now, many doctors still tell families with an SMA diagnosis to simply take their child home and love them for the little time they have. Hopefully, this thought process will be eliminated with a viable treatment available…we certainly hope so.
Always hate to wander onto the topic of politics but one of the hottest topics right now is the Affordable Care Act (“Obamacare” when speaking negatively of it.) The Affordable Care Act (ACA) removed Lifetime Limits and Pre-Existing Conditions. Prior to its enactment, an insurance company could set a lifetime limit and when a policy holder hit that limit, they could drop the insured client. Then with a pre-existing condition other companies could decline coverage. This can SEVERELY impact families and individuals with a severe and/or chronic diagnosis. One hopes to never need insurance but the fact is that NO ONE with a chronic illness can afford to be without it.
Spinraza is very expensive. Rightfully so I guess, as it will not simply save lives of SMA kids it will change their entire future with the disease. If a lifetime limit is allowed to be part of an insurance policy the children receiving Spinraza would meet those limits VERY quickly. We pray that somehow these provisions of the ACA will remain a part of whatever new healthcare plan is implemented upon our country.
So the short of it all is that Jadon will not receive Spinraza in the near future but we are certainly watching for options. We are praying for those friends who are traveling to get this miracle for their children. We pray it will help even the weakest of them to become strong.
We are blessed to have a front row seat to a miracle which is changing the course of young SMA lives, and it is AMAZING.
We also have a front row seat to this young man’s life, which is also very amazing and miraculous.
Jadon’s Hope Foundation is proud to have partnered with our friends at The Getty Owl Foundation to give away some amazing swings. A few families in the community have found these swings to work really well for their SMA kiddos and we think a few more families should have some fun. We decided that each Foundation would give away 6 swings each for a total of 12. However, after being overwhelmed with the response of over 125 different families, it was determined that we would donate a total of 20.
We hope each of the kiddos listed below will enjoy their swing, create new memories and “Dance in the Rain of this life Storm.”
The following families have been chosen as recipients of our Swing Giveaway:
All families listed will be contacted by either Jadon’s Hope or Getty Owl this week. Congratulations and enjoy!