Alyssa Maule

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases and I'm excited to participate. Please consider donating to our cause and being a part of transformative rare disease research.

In 2025, your donation will directly benefit my team’s organization. Your donation not only helps further rare disease research, but also benefits patients and families in the UGDH community.

My son Connor was born June 14th, 2020. Although we didn’t have a diagnosis of UGDH related encephalopathy until months later, his journey began the day he was born. He had many developmental delays and complications of this ultra-rare genetic disorder, including intractable seizures, hypotonia, feeding intolerance and respiratory distress. We freed him from his suffering on October 14th, 2021. Since Connor left this earth, it has been a priority of mine to make sure his struggles won’t die in vain. We have created The UGDH Foundation because who else is going to make a difference in an ultra-rare disorder if we don’t? We have made great strides in only two years of our start! This will be our first BIG event and how fitting that this year’s MDBR falls on his birthday!?! I hope, together, we can make Connor proud.

The difference you can make is immeasurable. Thank you for your support!