“Jadyn is now a healthy 6-year-old girl. Her seizures have finally been controlled after trying her 7th medicine, Lamictal.”
WE ARE COMMITTED TO SUPPORTING SYNGAP1
PATIENTS, FAMILIES & CAREGIVERS EVERY SINGLE DAY!
We've collaborated with the world's leading clinicians and healthcare centers to form, SYNGAP1 Centers of Excellence, where SYNGAP1 patients and families can access comprehensive care and the latest treatments.
Our SYNGAP1 Clinical - Research Experts, provide high quality healthcare for SYNGAP1 Patients, in accordance with the latest SYNGAP1 Clinical Guidelines.
They prioritize working closely with each SYNGAP1 patient/family to determine the best course of treatment. Each Clinical - Research Expert is also actively involved in conducting SYNGAP1-related scientific research.
Our Family Advisory Council is comprised of BTG - SYNGAP1 Family Members. The council prioritizes the recognition and integration of BTG - SYNGAP1 patient and family points of view, perspectives and experiences into BTG's overall mission.
They provide invaluable guidance to our organization on many programs and initiatives including:
Patient/Family Engagement
Patient/Family Experience
Organization Programs &
Initiatives
Fundraising Projects
BTG - SYNGAP1 patients and families are invited to volunteer and serve on Family Advisory Council committee's.
“Jadyn is now a healthy 6-year-old girl. Her seizures have finally been controlled after trying her 7th medicine, Lamictal.”
February 7, 2011 my whole world changed. My baby hadn’t moved in my womb the way she had been. I went to the doctor, they did a sonogram, and I was told I would have to have an emergency c section. At 1:54 pm my Elizabeth Grace was born; she was perfect, she needed oxygen at first but only for a short while. We were released normally, no delays....
This is our story, the story of a child, waiting for 8 years and then this birth, which we give joy to finally be parents. We do not know how one becomes a parent; you learn to be – our natural instinct to guide us this far...
Five and a half years ago, we took our beautiful baby girl home from the hospital. Life couldn’t have been more perfect.
Ena was born 20.02.2011. My happiness knew no bounds, I thanked God that gave me because I was desperate to. Childbirth has passed without problems, one received a score of 9. My dear, sweet, happy girl and I have a few days later arrived in a maternity home. Ena was a good baby…
When Beckett was 4 months old, I noticed he was not meeting the same milestones as his twin sister Pyper. Soon after, while I observed Pyper continuing to meet her milestones, Beckett fell further behind. Thus, the journey to find answers to help my son...
I felt there was something different about my daughter Hope even as far back as when I was pregnant with her. I kept having these recurring dreams that she was disabled. I was so adamant that something was wrong...
Around age 2. We knew something was going on with our little Payton. She wasn’t talking as much as her sister. It took her almost 17 months to walk. We always called her our quiet child. During this time, we started looking into tests and procedures to uncover what’s going on with Payton…