Sydney Stelmaszek is mom to 4-year old Syngapian, Emmit, and his two big brothers. She works with the SRF team as a special projects volunteer and attended the Million Dollar Bike Ride in person for the first time this year.
Over 750 cyclists gathered on June 11th, 2022 for the 9th Annual Million Dollar Bike Ride (MDBR) hosted by the Penn Medicine Orphan Disease Center. SynGAP Research Fund had twelve riders, five volunteers, and boasted the largest 72-mile distance team with seven riders completing the full course.
You might think that friends and family gathered in Philadelphia this year for the sake of a top-notch bike event and to raise funds for research. While all of this is true, The Million Dollar Bike Ride proved to be so much more. The connections, memories and relationships built between rare families will outlast all of the miles we pedaled.
If you have a loved one with SYNGAP1, you grow used to a unique and challenging existence that many around you don’t fully understand. For those who attended the MDBR, it was an amazing experience to connect instantly with other rare community members that totally get it. Not only that, the other rare communities that attended are also passionate about pursuing research that will positively impact their loved ones, just like our team at SRF. The atmosphere at the ride was full of hope with so many people gathered together to pedal towards a future full of treatment options and, possibly, cures.
After a morning of nearly perfect biking weather, Team SRF headed to the Philly suburbs to meet up with Team STXBP1. Dr. Ben Prosser is a researcher at UPenn supported by SRF and father to Lucy, who has STXBP1. He and his family have grown a large team over the years of the ride, lovingly named Lulu’s Crew. Team SRF was lucky enough to be invited to their after-ride BBQ. While there, we also met up with several Pennsylvania-area Syngap1 families and Dr. Heller, who was first funded by SRF in 2020 for her epigenetics work on SYNGAP1. She not only rode for Team SRF but got to share with us about her roles as researcher and SYNGAP1 auntie.
Every member of this year’s team has a connection to someone they love who has SYNGAP1. However, not everyone was an avid cyclist. Some team members rode the 13 mile route while others opted for the 34 or 72 mile routes. A few brave souls rode the full 72 miles with little to no training and arrived at the finish line cheered on by the rest of our grateful team.
This year, the Syngap Research Fund was chosen as a grant-matching partner by the UPenn Orphan Disease Center. While Team SRF was busy raising funds online and through gifts from friends and family, the Orphan Disease Center matched our donations up to $30,000. This means that we raised a combined $60,000 in funds for SYNGAP1 research at this year’s ride! This represents a significant opportunity to continue investing in the high-quality work already being supported by SRF at UPenn through Drs. Prosser and Heller.
Can we count you in? It’s not too early to start training. If you’re considering joining Team SRF in 2023, please add #Cycle4Syngap to your social profiles or on Peloton. You can also get in touch with our team leader and SYNGAP1 dad, Aaron (email@example.com), for more details.
Whether you’re a bike junkie or simply someone who cares for our community, we invite you to join us. Each year, the event offers the 13, 34, and 72 mile courses. Don’t want to travel with a bike? You can rent one through the event to use for the day. Virtual options will likely continue to be available, but we highly encourage teammates to join us in person. Maybe you have family or friends who are willing to ride as part of our team. One of the most encouraging stories from this year’s ride is Team Kailyn, composed of four friends who came together simply out of love for Kai and her family. In 2023, we’re looking to host an even bigger team at a group house in Philly and to connect again with other SYNGAP1 families and the larger rare community.