A Message From The Family…

To the STXBP1 community,

We are the parents of the patient who recently died in the SYNRGY trial of CAP-002, and we have learned of the tremendous outpouring of support for our family in this trying time. We are so deeply touched by all the thoughts, thanks, and prayers that have been sent our way. The STXBP1 community was a source of strength for us during our child’s life and will remain one after.  

While we mourn our sweet child, we also share your disappointment about this setback in the quest for a cure for STXBP1 disorders. If it had been someone else’s child, we would still be devastated. As for the doctors and scientists involved in the trial, we have nothing but love and respect for the work they do. We know that they have our children’s best interests at heart. 

For now, we wish to remain anonymous and grieve privately. We are fortunate to have many close friends and family supporting us at this time. The best way for everyone to honor our child’s legacy is to keep fighting for our STXers—pushing the science ahead for tomorrow while meeting the challenges our children face today. 

We trust that most parents of STXers understand that it is not a contradiction to love our children as they are while also wanting more for them.