2014 Bug RIDE for SMA
Saturday July 26th 2014
(Rain or Shine)
Registration Starts at 8:00 AM
Kick Stands Up at 10:00AM
Scenic Route to be announced
ALL VEHICLES ARE WELCOME!!
Ride will Start and Finish at Gails Harley Davidson
5900 Missouri 150, Grandview, MO, 64030
This ride is generously sponsored by:
THE BLUE KNIGHTS
KANSAS CHAPTER VIII
Aces Snap Shots
Donating a 3 hour photo booth with unlimited prints. Great for an office party, birthday party, or any event where people want to have fun.
Retail Value $898
PRP Wine International - KC
Donating an In-Home Wine Tasting Party for twelve.
Retail Value =$250
Apple Bus Company - Spring Hill, KS
Donating a bus, driver, and gas for 4 hours. Great for wedding party, bachlorette party, etc.
Bring your patches! Hazel will be on sight sewing on patches.
Sewing prices range from $2 to $12 depending on size.
BUG Ride patches will be on sale for just $5.
Jadon Burks; aka “The BUG” was diagnosed with the terminal disease Spinal Muscular Atrophy (SMA) on his 2 month Birthday. The news was overwhelming (to say the least) and while Jadon’s parents, Tony and Kristin, felt hopeless they were surrounded by incredible people, given good information, and became a part of an amazing “SMA family”. While they battle this disease daily they hope to help others facing this seemingly devastating diagnosis. Jadon’s Hope Foundation was formed to make an impact in the fight against SMA and to help families “Dance in the Rain”.
Even though 90% of kids with SMA Type 1 do not live to celebrate their second birthday the Burks were determined to "Dance in the Rain." Living one day at a time, the months have flown by and Jadon will turn FIVE YEARS OLD on June 25th, 2014. This is something the doctors said would not happen...They said he would live to be 8 -12months old.
"The BUG" has lost all movement in his body but he has not lost the sparkle in his eyes. He can't speak words with his mouth but he speaks volumes with his eyes. He fights like a warrior daily and despite the machines that must accompany him where ever he goes he manages to get out and enjoy life. Even more so, he makes life more enjoyable for all those around him.
- 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
- SMA is a genetic recessive disease that kills more babies than ANY other inherited disease. It is the number one genetic killer of children under the age of two.
- 50% of SMA Type I babies don't live to see their 1st birthday.
- 90% of SMA Type I babies don't live to see their 2nd birthday.