No fancy gala, no black ties, no ball gowns, and no silver platters. We, and our community, prefer to keep it simple. Speigletown, New York, is about 15 miles northeast of Albany in Upstate New York. It is nestled near the Hudson River and is tucked in right between the Adirondack, Catskill, and Berkshire Mountain ranges.
Our 2-year-old son, Barrett, was diagnosed with Rett syndrome shortly before his first birthday. From that day on, we vowed to do everything we could to help in the fight to find a cure. Hosting a Reverse Rett event was at the top of our priority list.
When we first decided that we would plan and host a Reverse Rett fundraising event, we did what many others do and researched other events across the country. It is exciting but overwhelming seeing the success and magnitude of other events, particularly those hosted in big cities. Although we admire the success that other brave Rett parents and supporters had, we knew our community needed something different.
We chose to host a family-friendly BBQ at our local firehouse. Barrett has three siblings who all adore him, so we knew we wanted an event that was family friendly to incorporate his big brothers and sister. We also wanted to keep it casual and welcoming for all community members to attend. The most crucial step in the beginning was identifying friends and family members who wanted to help us plan the event. We could not have done this without our awesome committee. Over the course of about six months, we planned everything from two live bands, large tents to provide shade and cover, several food trucks, kid-friendly activities such as a bounce-slide, dunk booth, and face painting, raffle baskets and sponsorships, and much more.
Our advertising efforts were grassroots. Our community shared Facebook, Instagram, and LinkedIn posts in the weeks leading up to the event. A family friend also let us share our story on his local talk radio show. We spent no money on marketing, yet we were able to draw the largest crowd our local firehouse has ever seen to their facility.
In the end, our small town raised over $320,000 for RSRT. We had an astounding 1,500 people attend the event, all of whom now know about Rett syndrome and our children who suffer from it. The atmosphere, love, and support on display that day is something no one will forget.
Galas and formal events are great, and there is always a place for them, but I wanted to share our story to prove that any parent or caregiver, anywhere in the world, can plan a casual event for their local community. I promise you will be surprised by the outpouring of love and support from your community. I promise that any event, no matter how big or small, formal, or casual, will make a difference in the fight to find a cure for Rett syndrome.