A Note from Zip’s Mom

As we gear up for a day of great food, family, and fun at ZipperQ 8, I can’t help but reminisce about how we got to where we are.

When we started this event in 2012, we had no idea what we were doing but were determined to make a difference. We consulted other successful fundraising families, gathered our family and friends and decided a BBQ competition was our thing. Friends and family went into action and organized the event and blew all expectations out of the water. The BBQ teams endured a night of cold storms and it sleeted throughout the event, but people showed up!

From there, my brother Robert and I created moreClaremore.com and set to work to do what we could to benefit both the Claremore and FOP communities.

The moreClaremore website has grown into a Claremore staple, and so has the ZipperQ event.

I’ve had the honor to serve on the board of the IFOPA for the past four years, serving as Chairman for the last two. The programs, services, and research that are sponsored by the IFOPA are phenomenal.

FOP is a devastating disease that causes muscles, joints, and connective tissue to turn to bone. There are only 800 known cases in the world. The IFOPA’s work in the past and the present has propelled us to be a leading rare disease organization.

The FOP families are a tight-knit bunch. We know the pain the others feel and can reach out in a heartbeat to someone who might have been in a situation that we could be experiencing. While we obviously consult many different kinds of doctors, the families and FOP’ers themselves know so much more about the disease than any of the local doctors. If we need help explaining the situation to a school or to a local specialist, it is likely there has been someone before you that had experience with this and can walk you through it. We also share ideas for tools to help increase independence and mobility.

Zip was just five years old when we held our first event. This year, he’s in his first year of junior high and measuring in at 5’1”. He’s put up with his fair share of FOP challenges but that hasn’t stopped him yet. STEM and computers are his favorite classes and he has hopes of being an automotive engineer (I wonder where he gets that!).

After seven years of successful ZipperQ events, we are hoping to cross the ONE MILLION DOLLAR mark this year! Always in awe of the support from our families, the Claremore community, and the FOP community, we now look forward to this special day in Claremore.

ZipperQ is a BBQ throwdown, cornhole competition, concert and all around great day of sounds and smells. This year, it will be held at the Claremore Expo on Saturday, October 5.

Hope to see you there!

-AG
AKA Zip’s Mama

 

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