Allison Kyriagis

Fundraiser Profile

Participating in 2026 Million Dollar Bike Ride

Member of Lulu's Crew / STXBP1 Encephalopathy

Join us in fighting and fundraising for a cure for Ellen and her STXBP1 disorder friends!

The Kyriagis family is fundraising again to help change the trajectory for families like ours who have children living with STXBP1 disorder. Thanks to all of you, in 2025 we raised $13,700!

This year we are joining our STXBP1 friends, the Prosser family in Philadelphia, to fundraise again for the Million Dollar Bike Ride - a fundraiser that helps fund research grants for rare diseases.

Our team, Lulu's Crew, raised $1 million(!) in 2025 and has helped fund 14 scientific labs studying STXBP1 over the last 7 years to significantly increase the scientific footprint of the disorder, spurring seed grants for the scientific community to increase interest in STXBP1.

This matters now more than ever. Our community was hit with a devastating loss last year. STXBP1 was able to participate in the first clinical trial for a STXBP1 gene therapy and the first child died. The loss is devasting; however, this puts the fight in us even more. We will continue this effort until there is a treatment or cure that works for our kids. Your donation will directly benefit this work! Thank you for your support!

Allison, John, Ben, Max and Ellie

About the Event

Jun 13, 2026

07:30AM

Donations 13

Organizations participating in the 2026 Million Dollar Bike Ride will receive the funds raised by their team. Your donation plays a pivotal role, allowing organizations to not only support rare disease research, but make a direct impact on patients and families in their rare disease community. Thank you!

Million Dollar Bike Ride is coordinated by Penn Medicine's Orphan Disease Center.