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).
Jadon’s Hope Foundation
All posts tagged Jadon’s Hope Foundation
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 jadonshope@sbcglobal.net.
Again, congratulations on to our 2018 Summer Swingin’ program recipients!
Not Pictured – Jericho Chadsey
Life isn’t about waiting for the storm to pass,
It’s about enjoying a good swing.
6th Annual BUG RUN held April 7, 2018.
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
Amy V.
Heather A.
Michele L.
Cathy L.
Melissa C.
Jennifer S.
Holly H.
Melissa H.
Joanne B
Kristen W.
Tiffany S
John E.
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!
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.
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Jadon is 6 years old…plus a few weeks.
Jadon turned six on the 25th of June and a funny thing happened this year – we were busy. We were busy LIVING life. We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us. We forewent the big party for a gathering with a few of his close friends. And what fun they had!
This year, we celebrated his birthday by going bowling – a first for Bug. Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant. Phew, partying can sure wear a kid out! The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team. Following the homerun trot his team sang happy birthday to him at home plate. This is definitely a highlight of the whole year.
The pure miracle of Jadon doesn’t come to mind on a day to day basis. It is the milestones where we stop and look around at where we are.
SIX YEARS.
Three times the prognosis of SMA Type 1. The really strange thing is that these days seem to be our best days yet. We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives. So, we’ll say it softly, just once…he’s doing awesome.
Jadon has completed kindergarten and will be entering the 1st grade this fall. He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime. Not to mention all of his friends across the country, ones he has met in person and others on-line. He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics. He is a six year old little boy.
A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City. This was an incredible experience as we got to see many families we already knew and others we had never met. There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven. It is something to see families at all these different stages of the SMA journey.
We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.
On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy. We were yet to have our lives turned upside down. We were yet to understand how strong our hero would have to be. How strong we would have to be. Jadon has been through a lot in six years. There have been some extremely scary days that we thought would be our last but there have been far more beautiful days. Days where his eyes sparkle just a little brighter. Days when the faint giggle on his breathe is a little louder. So many days that we thought we would never have. So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.
This Saturday, Jadon is going fishing with his buddies…..another first.
The Birthday Haul
Amy Vrban & Kristin BurksWRITTEN 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.
The SMA community is constantly trying to spread awareness for a disease that most have never heard of. SMA is relatively unknown despite being #1 genetic killer of children under two. We are always looking for unique and creative ways to help get people informed. When Mrs. Sheldon, the librarian at Rolling Ridge Elementary School (school Jadon attends) came to us with her Flat Stanley idea, we were overwhelmed with her creativity and enthusiasm as well as the potential “reach” of this project.
We feel Mrs. Sheldon explains it best in this short video:
All 450 students at Rolling Ridge Elementary have read a funny book titled, Flat Stanley, written by Jeff Brown. The book is about a young boy named Stanley Lambchop. He is accidentally squished “as flat as a pancake” when a bulletin board falls on him. Stanley is fine, except for the fact he is very flat. Stanley discovers some advantages to being flat. He can slide under doors, go into sidewalk grates, and even fold himself up small enough to fit into an envelope. When Stanley wanted to visit friends in California, his parents folded him up and placed him in the mail.
All the students made their own Flat Stanley and they have been sent near and far. Accompanying each Flat Stanley is an SMA warrior or angel. Over 100 SMA kiddos are represented!
The project is simple, when someone receives a packet we simply ask that they take their Flat Stanley and SMA Warrior/Angel on some adventures. Take them to fun, exciting places, hang out with you at the movies or just have them at Christmas dinner but make sure to take pictures and send the pictures back so we can see where they have been. We hope to have pictures from all over the world. Pictures can be emailed to: flatsrr@olatheschools.org
Here is another blog telling what we want you to know about SMA: SMA Awareness – What We Want You to Know
Many Flat Stanleys and SMA Warriors/Angels have already been out doing some pretty awesome things. Check out these adventures!
The Johnson County Old Settlers Parade is the largest parade in the state of Kansas. It has an average of 160 entries, including 16 area High School and Middle School bands, numerous club and organization entries and several commercial floats. The parade is attended by between 65,000 and 75,000 people. Jadon’s Hope Foundation entered a float themed “Dancing in the Rain”.
The day was a perfect sunny 70 degrees. JHF supporters walked with the float while SMA warriors Jadon, Arturo, and Amira road along. 3,000 SMA fact cards and over 100 t-shirts were handed out to the crowd. It was a perfect day.
A big giant THANK YOU to all the walkers and riders who helped spread SMA awareness.
Jadon's Hope Blog 