Pictures from The BUG RUN 2016

For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE

 

When Your Legs Get Tired, Run With Your Heart

 Amy Vrban & Kristin Burks

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!

A Difficult Reminder: Why We Fight and Why We Dance.

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 13^th 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.

Elementary School Spreads SMA Awareness Across the Country and Around the World

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 BUG RUN – 2014

On April 5^th 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!

 

Pictures of 2nd Annual Jadon’s Hope BUG RUN

  Jadon’s Hope BUG RUN
was held on
April 5th, 2014

 

 

 

Bettin’ on HOPE! SMA Fundraiser

On Saturday October 5^th Jadon’s Hope Foundation hosted our fundraising event, “Bettin’ on HOPE!”  The evening was appropriately titled because that is what we do every day of our SMA journey – we bet on hope and we dream of a day when SMA is cured.  As a newly formed foundation, we are committed to building awareness, funding research efforts and helping families.   When Jadon was diagnosed, we were blessed to be surrounded by amazing support from families that had walked the path before us and we vowed that one day, we wanted to pay it forward and help other SMA families.  In our first year, Jadon’s Hope Foundation has been focused on raising awareness and directly impacting families.

The night started out strong and was full of awareness!  On every table we had pictures of SMA Angels and SMA Warriors – each paired with a Personal Sponsor.  Our Personal Sponsors came from all across the country – in many cases, they did not know the SMA Angel or SMA Warrior they would be sponsoring, but they too want to see an end to SMA.  And with every bid that took place during the live auction and every bid line filled during the silent auction – we saw another Angel or Warrior face.  Those precious faces we are committed to help.   We saw families receiving a piece of much-needed equipment.  We saw one more person learning about SMA.   We saw extraordinarily generous people open up their hearts and want to make a difference in the lives of SMA families.  And for that, we are humbled.

For those who attended, a sincerely giant THANK YOU.    The event raised over $25,000.  Because of you, JHF will be able to have an immediate impact on SMA Families.  Earlier this year, we partnered with the Gwendolyn Strong Foundation (GSF) with a grant for their Project Mariposa program.  With funds raised during “Bettin’ on Hope”, we will be increasing our support of Project Mariposa as well as purchasing much needed equipment for the Families of SMA equipment closet.  This means over 25 families in the coming months are going to be directed impacted.  WOW!  Truly, it was a night to remember.

There were so many people who did so much, but we definitely have to recognize Robbin Gill who put the whole night together.  She did an amazing job with the entire event.  We also have to thank Christy Rottinghaus for her hard work of hitting the pavement and finding people willing to donate all of those amazing items.

Robbin Gill

We would like to thank our, event sponsors, table sponsors, and mini-racer sponsors.

Our ACES SPONSORS

KING SPONSORS
Dimensional Innovations
It’s Your Party KC

QUEEN SPONSORS
Synetic Technologies
Cretcher Heartland
Butler Transport

JACKS SPONSORS
Survey Square
Rob the Realtor
Chem Station
Woodson Place Antiques & Interiors
Morgan Hunter
VSP Vision
Nextaff

We will be posting  the Warrior/Angel table cards on our facebook page over the next couple of weeks.  Be sure to check them out at:  www.facebook.com/JadonsHopeFoundation

(These beautiful ladies are sisters)

Besides the typical casino games like Blackjack, craps, and roulette we also had LIVE MOUSE RACES.  This is the Championship Race!

The video shown at the event (without “This Little Light of Mine”)

A Moment

In the heat of the battle, when the pressure is on, during the crunch time before a big event there are moments when the purpose gets lost.  Things become a process that simply needs to be done.  A task list takes the place of intention and care.  The other night I was up late as there was so much to get done before the event “Bettin’ on HOPE!” actually happens on Saturday.

I was sitting at the desk working on two computers, cropping pictures, adding words, making cards, and making videos.

I knew I was tired when I began thinking out loud in this strange voice that echoed my every thought.  Believe me you, most of my thoughts are not worth echoing.  Knowing that crazy little voice, as it has appeared before, I knew I was about to hit the wall. 

Instead, I hit the recline lever, closed my eyes (hoping I wouldn’t fall asleep), took a deep breath and experienced a moment. 

Opening my eyes I looked at the two screens full of beautiful SMA faces and I saw things differently than before. Those faces didn’t represent a project that needed to be completed.  Those faces represent beautiful beautiful lives.  Lives that I am honored to know about.  Lives I am honored to serve.

Those faces represent every reason we started a foundation. 

I love the abilities I have been given to serve a higher cause than myself.  I dislike when I lose sight of that cause even for a moment, when the process overtakes the reasons. 

I sat back in awe of all those faces who fight the same fight every day that Jadon fights, all those families that fight the same fight we fight.  They represent the struggles and the challenges that we feel each and every day.

I am one blessed guy to be serving a God that allows me to know these faces, to know their stories and to be a part of such an amazing life.

I think we all struggle with whether or not we are doing what we were meant to do and I have no idea if I am on the right path or not, but I know that in that particular moment everything felt right.  The work changed from being just a process to an honorable role.  I took great care to make sure Lizzy’s picture was in the right place, I double checked to make sure Charlie’s name was big enough, and I double checked that I had Samantha’s “favorites” correct.  I felt that they were all here watching… and it was awesome.

I don’t know what the event itself will bring but all this work has already been worth it.

Fun with Chicken

Wednesday night the Chick-fil-A in Olathe hosted a small fundraiser for Rolling Ridge Elementary benefiting Jadon’s Hope Foundation.  Well… small is what we thought it might be.  We are quickly learning that with these amazing new friends from Rolling Ridge – nothing is small!

Because of cold and flu season we are still not taking The BUG out of doors.  However, his amazing teacher took a laptop and we Skyped in (that’s Ms. Lentz holding Jadon in the pictures below.)  Jadon could see and hear the events at the restaurant and watch the contestants compete in the chicken eating contest and frozen t-shirt contest.  Skyping also meant that everyone could come over and say hi to Jadon.  Needless to say he was incredibly excited and soaking up the moment!

That’s The BUG on the computer screen, right in the middle of the action

When someone would come up and say “Hi”, Jadon became through the roof excited and began vocalizing louder than we have heard since his trach surgery in July.  For the past month, Jadon hasn’t made any sound and only recently started vocalizing again.  Parents, I know it may sound inviting to have your child be silent, but trust me, complete, not a sound silent is no fun at all.  When his classmates would come on the screen, Jadon would get really loud and he had a great time cheering on the contestant participants.  Mad props go out to Rashaud Johnson for winning the nugget eating contest and to Michelle Williams for winning the frozen t-shirt contest.

It was very emotional to see such a large turnout.  Kristin said she got  misty eyed walking in seeing how many cars were in the parking lot and going through the drive-through and seeing the number of people in the restaurant.  She said every table was occupied and people were even standing up- overwhelming for sure!!  And to see all the kids there – wow!  There is nothing better than kids helping kids.

We won’t know the total donation from the night for a couple more days but there was $150 in the donation bucket alone.  One of the cashiers said it was a very good night.  We will have to wait and see, but I think it is safe to say that SMA awareness was spread and money was raised to increase the fight.  Thank you, thank you , thank you.