CURE SYNGAP1 Volunteer
I’m a mom to 10-year-old Jackson, who was diagnosed with SYNGAP1-Related Disorders (SRD) in December 2021 after years of searching high and low for answers and relief from his symptoms. As Jackson has grown, so has my understanding of just how difficult it is for families like ours to access the support, services, and answers we desperately need.
In the early days of his diagnosis, I felt completely alone, drowning in uncertainty with no clear path forward. I couldn’t talk to friends or family about what we were going through, and I spent years in survival mode, just trying to make it through each day. After nearly a decade of navigating the medical and educational systems, I’m passionate about helping other families find resources, support, and a sense of community that they deserve. On my social media page, I share the raw and honest realities of profound autism, the parts many are afraid to speak about for fear of judgment, both from outside the disability community and, sometimes, even within it.
I know many people with SRD are also diagnosed with autism, and I want as many people as possible to come to recognize the name SYNGAP1. If I had heard of it before Jackson’s diagnosis, I know I would have looked into it and maybe found answers sooner. I’ve grown a small but meaningful following online by sharing our story, and it’s my hope that through our online presence, we can help identify other undiagnosed Syngapians.
As a parent-led, volunteer community, I believe this is one of the most powerful ways I can support the CURE SYNGAP1 and raise the awareness necessary to change lives.
Read Jackson’s Warrior Story here.
Listen to Nicole on SYNGAP1 Stories Podcast here.
Listen to Mike and John read Nicole’s book ‘The Monster Inside My Brother‘ on CURE SYNGAP1 Podcast, Episode 191