Our SETBP1Strong Team participation in the Million Dollar Bike Ride wrapped up this past Saturday, June 11th in Philadelphia, PA.

The event kicked off the night before with registration Friday afternoon at the University of Pennsylvania Orphan Disease Center. Cyclists who registered early enough with fundraising goals picked up their goodie bags packed with their MDBR 2022 jersey, a blue towel, MDBR t-shirt, bright orange MDBR socks, a fanny pack, a water bottle, a sticker, a carabiner, and their bib and helmet stickers. Jim Wilson, MD, PhD, the director of the Orphan Disease Center, spoke at the kick-off MDBR Happy Hour which provided a way for the 30+ teams to gather and greet before the MDBR event.

The next morning, we all met up across from the University of Pennsylvania Orphan Disease Center around 6:50am in Highline Park. For those of us not from the area, we headed to the bike tent to pick up the bikes we rented. We gathered with some of us meeting each other for the first time ever :)! Here we are heading to the starting line. We unfortunately could not grab a photo of all of us in one photo.

Energetic and excited about being together and raising funds for SETBP1-HD and SETBP1-related disorders research, we headed to the starting line!

It was a cloudy, breezy, and beautiful day for a bike ride!

As our SETBP1Strong cyclists finished up their ride, we gathered around the finish line to cheer on our teammates who were riding longer races! Let’s check out some photo finishes of our SETBP1Strong teammates wrapping up their MDBR ride!

The MDBR gave us the opportunity to not only raise the needed funds for SETBP1-HD and related disorders research but also provided a wonderful venue for sharing stories and celebrating together.

As of the moment (June 14th), our 2022 SETBP1Strong MDBR Team has raised $57,925!!! With the UPenn ODC matching, we have raised $87,925 for the 2022 SETBP1-HD and related disorders research grants.

As of August 15th, the total raised with matching is $91,664!!!

Our Progress