Johan Fagerholt

Lilly was diagnosed with a TBC1D24 mutation just before her first birthday, after seizing mostly uncontrollably since she was three months old. With the help of our family and friends, we continue to advocate for Lilly and any other individuals with a TBC1D24 mutation. Please join me in raising awareness and much-needed funding for this rare disease.

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. Please consider donating to our cause and being a part of transformative research. 100% of your donation, less platform fees, will go towards rare disease research.