The MED13L Foundation

Team MED13L — Million Dollar Bike Ride

In recent years, Team MED13L has been building momentum at the Million Dollar Bike Ride, raising critical funds for MED13L syndrome researchers through the Penn Medicine Orphan Disease Center. These funds allow researchers to conduct studies, generate preliminary data, and pursue larger grants — accelerating the path toward meaningful treatments for a condition that currently has none. For children and families living with MED13L syndrome, every dollar raised is a step closer to answers.

Team MED13L will be riding again this year — and this year, we're hosting our own donation page so that 100% of every dollar raised goes directly to research with no platform fees. Please follow the instructions below to make your full contribution count.

STEPS for In-Person Participation in Philadelphia:

1. Register HERE.

2. If you are cycling, choose "In-Person Cyclist – Fundraising Optional" and click "Select." On the next page, de-select "Create a Fundraising Page" and complete the process.

3. If you are walking, choose "Million Dollar Mile" and click "Select." On the next page, de-select "Create a Fundraising Page" and complete the process.

4. Create your fundraising page here. This ensures that no fees are deducted from any donation — every dollar goes straight to MED13L research.

Questions? Contact The MED13L Foundation at info@med13l.org or reach your Team Captain at vdias@med13l.org.

About MED13L Syndrome

MED13L syndrome is an ultra-rare genetic disorder caused by pathogenic variants in the MED13L gene, which plays a critical role in brain development. It is characterized by moderate to severe intellectual disability, absent or significantly delayed speech and language, hypotonia (low muscle tone), and distinctive facial features. Many individuals also experience seizures, motor delays, and behavioral challenges. MED13L syndrome affects individuals of all backgrounds and is present from birth, though diagnosis is often delayed due to its rarity and the limited awareness among clinicians. There are no approved treatments, and the full natural history of the condition is still being mapped.

The MED13L Foundation exists to change that — by funding research, supporting families, and driving toward a future where real treatment options exist.