MDBR 2023 – Everything we want to “C” happening for SYNGAP1: Camaraderie, Community, & Collaboration

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Sydney Stelmaszek is Emmitt’s Mom and a member of the SynGAP Research Fund Board of Directors. On behalf of SRF, Sydney is involved with patient engagement in the SYNGAP1 community. Sydney was a first-time rider in this year’s MDBR.

The Million Dollar Bike Ride is hosted each year by the Orphan Disease Center at UPenn in Philadelphia. SynGAP Research Fund was a matching grant team in 2022 and 2023, meaning that ODC matches the funds raised by our cyclists. Since its beginning, the Million Dollar Bike ride has raised over $17m for rare disease research.

Camaraderie – Team SRF has grown!

Up from 2022, the 2023 team was composed of 23 cyclists from 7 states. Some trained on their own bikes on roads and trails and Pelotons, while other brave souls hadn’t pedaled in a while. We had parents, caregivers, family friends, and researchers all represented. So far, the riders have collectively raised over $21,000 with two weeks still left to meet their goal of $30,000.

Community – Team Kai Inspires On and Off the Course!

Members of Team Kai

Team Kai is part of the overall Team SRF and is headed up by Kali and LJ Pijnenburg, parents to Syngapian Kailynn. Despite the poor air quality from the Canada wildfires, Team Kai was still 10 riders strong between in-person and virtual riders. Together, they raised over $13,000. This community of friends, neighbors, coworkers, and friends of coworkers has been committed to riding and raising funds through the MDBR since 2020. Their efforts began during the virtual-only rides of the pandemic and, year by year, more riders have made the trip to Philly to ride in person.

It was inspiring in 2022 to hear Kali and LJ’s neighbor, Luis, share about his interactions with Kai which prompted him to start riding in the MDBR. Kali notes that Luis even comes by to attend Kai’s ABA therapy sessions sometimes so that he can better support her learning and behavioral needs alongside her family. Colleagues from Kali’s work were even present this year from the D.C. area. When her company decided to focus their philanthropic efforts towards the intellectual disability community in 2023, supporting Team Kai at the MDBR was a perfect fit.

Team Kai represents the power of community; multiple spheres in the family’s life coming together to do what they can to create a better future for people impacted by SYNGAP1. Everyone has a part to play. The Million Dollar Bike Ride represents this power as well by providing an event that offers a way for everyone to help from volunteering to staff the event to riding to fundraising. Anyone who wants to come cheer on Team Kai and Team SRF will be welcome additions at the 2024 finish line!

Collaboration – (and some friendly Competition) with STXBP1

Teams SRF and Lulu’s Crew (representing STXBP1) at the 2023 finish line

SRF supports two researchers through grant funding at UPenn: Dr. Ben Prosser and Dr. Liz Heller, both of whom have family members impacted by rare, neurodevelopmental disorders. Dr. Prosser’s daughter, Lucy, is the inspiration behind Lulu’s Crew, one of the largest teams that shows up each year at the MDBR. SynGAP Research Fund is lucky to ride alongside such a force for good. While continuing to work on ASO-focused treatments in the world of SYNGAP1, Dr. Prosser will also head up the Children’s Hospital of Philadelphia’s (CHOP) Center for Epilepsy and Neurodevelopmental Disorders (ENDD). This is the institution that will be conducting a Natural History Study for SYNGAP1 along with STXBP1.

Lulu’s Crew and Team SRF met up at Dr. Prosser’s home after the ride for a family- and disability-friendly picnic. It was an amazing evening for the rare community with fellow parents, their children impacted by rare disease, neurologists and scientists all coming together. This time served as an opportunity for local SYNGAP1 families to drop by and meet the SRF team. We had one SYNGAP1 family make the drive from New Jersey this year, and we invite anyone who wants to travel to Philly to join us in the future.

If you’re interested in joining Team SRF at the Million Dollar Bike Ride in 2024, reach out to team leader Aaron Harding (aaron@curesyngap1.org). There is a way for everyone to contribute at the MDBR, regardless of riding level, and it makes a great opportunity for inviting friends, colleagues, and family to make a tangible difference in the lives of people impacted by SYNGAP1.

Team SRF at the 2023 Million Dollar Bike Ride in Philadelphia