I met Jadon Burks and his family when he came to Rolling Ridge Elementary School where I teach. My life was forever changed when a parent at our school, Amy Vrban, decided to put on a 5K to raise money for a student at our school, Jadon Burks, has Type 1 Spinal Muscular Atrophy (SMA). I had no idea what SMA was until our first committee meeting. SMA is the #1 genetic killer among infants under the age of two. What? Why had I never heard of this before? How did I know nothing about SMA? I learned even more facts about SMA that were startling such as 50% of SMA Type 1 babies don’t live to see their first birthday and that 90% of SMA Type 1 babies don’t live to see their second birthday.
After learning the facts and learning of this heartbreaking genetic disease, I wanted nothing more than to volunteer to be on the committee for the race. But what I didn’t realize was that I was going to meet some extraordinary people along the way: The Burks family. I am blessed to know Tony, Kristin, Jadon, and Gracyn. Jadon’s parents are hands down some of the most wonderful people that I have ever met. I have grown to love not only this family but the entire SMA family. I found myself thinking that this is exactly where I needed to be: running and family together! I have two of the three things that I am passionate about, but I want all three together!
And this is where we need to raise money: Getting our students at Rolling Ridge involved in the race. And I want ALL the students to have the opportunity to join in this amazing cause and support a classmate! Rolling Ridge is a title one school and about 70% of our families are on free or reduced lunch. Over the last three Bug Runs we have had about 50-60 students each year. This is devastating because our school has a population of about 450 in grades K-5. I believe the reason we don't have many students participate is because the reduced price of $15 is still too much money for many of our families especially families with multiple kids. I want our students to be passionate about supporting a cause and supporting Jadon, who is now a 1st grader at Rolling Ridge Elementary!
Just think, by donating $15 you are supporting a student at Rolling Ridge to run for this wonderful cause!
Side note: The Jadon's Hope Foundation is sponsoring me at the Boston Marathon on April 18th, 2016 so that we can spread more awareness of SMA from Kansas to Boston!!! I mean, how awesome is that! But what is even more awesome is that the fourth annual Jadon's Hope Bug Run is April 30th, 2016 and I can't wait to come back from the Boston Marathon and hopefully run with all of our students at Rolling Ridge!!!
For more information about SMA or becoming a sponsor for the 2016 Jadon's Hope Bug Run, please visit www.jadonshope.org
- Sam and Susan Gutovitz
- Grandma and Grandpa Wahl
- Mary Mozingo
- Janet Wahl
- Cindy Friedman
Organizer and beneficiary
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