Charlene Son Rigby

We are riding to Cure STXBP1 disorders.

My ten year old daughter Juno has a severe neurological disorder called STXBP1 encephalopathy. This is a rare, genetic, neurodevelopmental disease that results in severe intellectual disability and an unpredictable combination of seizures, motor and behavioral impairments. Juno started missing milestones at 3 months old which started a three year journey to a diagnosis.

Juno's diagnosis was life changing for our family on many levels. There is no cure; she was not going to "catch up". We wanted to do as much as we could for Juno and kids like her. With this motivation, we co-founded the STXBP1 Foundation in 2017.

We are fortunate to have an amazing family community including Erin and Ben Prosser with a five-year old daughter, Lucy, who also has STXBP1 disorder. Ben has started working on the disease in his lab, and has also joined the foundation Scientific Advisory Board. We are working to activate collaborative research at top neurodevelopment labs throughout the U.S. and Europe. There are several therapeutic strategies that could work, but these require time and money to test!

Biking for Juno & Lucy.

To raise money for research, I will bike 13 miles during the Million Dollar Bike Ride on June 8th. 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 Juno & Lucy's condition. Every dollar goes directly to research, and Dr. Prosser 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 Juno & Lucy's generation. Researchers have already made real progress towards developing a new therapy and you can help us and others in our fight to cure this disease.