Lulu's Crew / STXBP1 Encephalopathy

We are riding to Cure STXBP1 encephalopathy.

Lucy Prosser (aka Lulu, LuluBelle, Goose) was born in May 2018, and shortly after was diagnosed with a rather severe neurological disease called STXBP1 encephalopathy. This is a rare, genetic, neuro-developmental disease that results in severe intellectual disability and an unpredictable combination of seizures, motor and behavioral impairments.

There are no cures, but we're working to change that.

Since the disease was only described in 2008, there has been minimal research into developing new cures. Ben (Lucy's dad) has started working on the disease in his lab at Penn and with collaborators at the Children's Hospital of Philadelphia (CHOP), where Lucy and other kids with STXBP1 are treated.

Over the last 5 years, Lulu's Crew funds have begun to motivate work in parallel at top neurodevelopment labs throughout the U.S. and Europe, in partnership with the STXBP1 Foundation. There are several therapeutic strategies that could work, but these require time and money to test.

When you donate to this cause, you will know exactly where your money is going - to the top labs around the world working directly on developing a cure for STXBP1. Every dollar goes directly to research, and Ben will work with the Orphan Disease Center to help make sure the money ends up in the hands of expert scientists and clinicians who have the best chance at developing a cure to help kids NOW, in Lucy's generation. They have already made real progress towards developing potential therapies and you can help us and others in our fight to cure this disease.