For the fifth straight year, Team CURE SYNGAP1 hit the pavement for the 13th annual Million Dollar Bike Ride (MDBR), hosted by the Penn Medicine Orphan Disease Center (ODC)! This incredible event brought hundreds of cyclists to Penn’s campus to tackle routes up to 72 miles for rare disease research. Other riders participated from afar, electing to cycle 10, 32, 50, or 72 miles from their own neighborhoods. In its 12-year history, the MDBR’s collective teams have raised over $22 million to directly fund rare disease research grants.
As in past years, CURE SYNGAP1 was out in force, both in Philly and remotely. Our incredible crew came in 11th out of 38 rare disease teams on June 13, 2026, raising an impressive $11,506 of the day’s event totals. Leading the pack a second year running, Heather Mestemaker brought in nearly $8.5k in honor of her son, Thomas. Thomas’s teacher also participated by riding and fundraising herself!
Justin Albrecht conquered a whopping 70 miles outside Pinehurst, North Carolina on behalf of his daughter Harper. He’s participated in MDBR every year since Harper’s October 2023 SYNGAP1 diagnosis.
“70 miles. Every single one for Harper. Today I rode in the Million Dollar Bike Ride benefiting CURE SYNGAP1 — and this one is personal. Our daughter Harper has SYNGAP1, a rare genetic disorder that affects her every single day. But she is the toughest person I know, and she inspires me to keep pushing. To everyone who donated — thank you. Truly. Every dollar goes directly to research that could change the lives of kids just like Harper. You’re part of this. This one’s for you, Harper girl.”
Aaron Harding, Jaxon’s Dad, lent his powerful support all the way from California. We were equally thrilled to have Dr. Jillian McKee, our famed ENDD neurologist at CHOP, trade her clinic coat for cycling wheels in Philadelphia. Seeing a key ProMMiS physician ride alongside us for SYNGAP1 research means the world to our community.
From parents and physicians to a teacher riding for her SYNGAP1 student, our CURE SYNGAP1 team proved that our community shows up for one another.
While the physical ride in Philadelphia has wrapped up, our momentum hasn’t stopped. The dedication of our cyclists, families, and donors brings us one step closer to changing the landscape of a SYNGAP1 diagnosis. Every dollar raised directly impacts the speed of scientific discovery and paves the way for a brighter, more independent future for our children.
A massive thank you to everyone who rode, donated, cheered, and poured their hearts into making this year’s Million Dollar Bike Ride a roaring success. We are small but mighty, and together, we are unstoppable!
Missed the ride but still want to support the team? It’s not too late to make a difference!
cureSYNGAP1.org/donate
Suzanne Jones
CURE SYNGAP1 Board of Trustees Chair & Development Director | Mom to Jansen
