History of the Scarlett Parks Foundation

What began as a simple bike ride turned into one of my greatest passions.

My love for cycling was the foundation for Riding4Rett and ultimately for the creation of the Scarlett Parks Foundation, two charities dedicated to helping fund the discovery of a cure for Rett syndrome. A life-altering disorder, Rett syndrome hits very close to home for me; our granddaughter Scarlett, is among the thousands of children (mostly girls), living courageously with their RS affliction.

One Sunday in early 2016, as I rode my bicycle home from a 5k run, I was overcome with emotion thinking that my granddaughter would never be able to ride a bike, run or even walk. As I pedaled along with tears filling my eyes, I called out to God: ‘Lord what am I to do to help find a cure? Use me!’ It was then that I was given the leading that this bike would be my tool to use. Not being a dedicated cyclist, I knew that this call was going to require significant dedication and effort on my part. I set a goal, the GranFondo, and started riding morning and night to prepare for it. The GranFondo, staged in Tehachapi California, is 104 miles of basically nothing but hills.  I had no idea how to train for it, but I did it anyway and on race day I happily pulled Scarlett across the finish line in a small trailer attached to my bicycle. Completing that ride inspired me to train and ride in different cycling events throughout the year, always hitching up to Scarlett in her “chariot” during the final miles and pulling her across the finish line. This act, to me, symbolizes that the true finish line for Scarlett and all RS sufferers will be the eventual discovery of a cure for Rett syndrome.

During the sponsor recruitment portion of my fundraising rides, I was often asked if my charity was a non-profit with 501(c)3 status. The importance of that designation quickly became clear, and I immediately began to pursue a non-profit status. Riding4Rett was the original name chosen for my cycling events for a cure, but through the non-profit designation process I was encouraged to choose a different name for our overall non-profit entity, and that’s how the Scarlett Parks Foundation was formed. Named in honor of our granddaughter Scarlett, the Scarlett Parks Foundation has made a commitment to Scarlett’s care and to support rettsyndrome.org, Katie’s Clinic and Valley Children’s Hospital with all funds raised by the projects, and events we will undertake. Just as any parent and a grandparent would be, I am committed to doing anything within my power to accelerate the discovery of a cure for Rett syndrome and seeing my little Scarlett grow up to do the amazing things in this world that God created her to do.