Dear Friends, Family, and the Orange Beach & Gulf Shores community,

On Saturday, September 13th, we will host Shindig for Shreve: Touchdowns for a Cure in Orange Beach, and this event is more than just a gathering. It’s our lifeline to move forward with a gene therapy clinical trial for CTNNB1 Syndrome, the rare genetic disorder our daughter Shreve lives with every day. It affects nearly every aspect of her life and she struggles with cerebral palsy, autism, behavioural and sleep issues, and many more symptoms.

CTNNB1 Syndrome affects only 430 children worldwide, and because it is so rare, there is no government or pharmaceutical funding. Families like ours must carry the entire burden of raising millions of dollars to give our children a chance at independence, mobility, and communication. This trial—medicine for only 12–13 children—has cost us more than $5,000,000 over the past 5 years, and we are in the final push to raise $220,000 by the end of September to make it possible. All of us (parents of CTNNB1 children worldwide) are scrambling to fundraise as much as we can in September to reach the finish line for our children.

The incredible news is that the medicine is already made, and we’ve even met with the research team, neurosurgeons and toured the hospital where this trial will take place in Ljubljana, Slovenia. Everything is ready—all that’s missing is the funding to get these children treated. We expect the gene therapy to give our children a 50% better quality of life comparing outcomes of similar treatments with other rare diseases. Our daughter, Shreve, has her name in the hat for being selected and participants will be selected as soon as the funding is secured.

We have already received amazing support from our community, but we are still short of what we need.

Every dollar brings us closer to hope, and every act of generosity is a step toward changing Shreve’s life and the lives of other children like her. Together, we can turn game day into a game changer.

With gratitude,

Crawford McWilliams

Shreve’s mother & advocate, volunteer for CTNNB1 Gene Therapy Foundation

EIN 99-3901640

Shindig for Shreve - “Touchdowns for a Cure”