(The post below was written by my wife Chelsey Navarro)
This week we had the opportunity to attend the SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders conference and I don’t even know how to put the experience into words.
For the first time, we were surrounded by families who truly understand what it means to live with SYNGAP1. We got to meet other kids like Emmy—kids who, like her, are facing incredible challenges but also have so much joy and resilience to share.
We felt this overwhelming sense of hope and belonging. While I loved the science aspect as well, it was just so great seeing the parents fighting for their kids, the researchers who won’t stop until they find answers, and the community coming together to share, cry, and celebrate the little wins.
Leaving the conference, I feel more hopeful than ever but also more determined!! We are so so close to a breakthrough—a cure feels within reach. There are repurposed drugs that are working and clinical trials just on the brink of being a reality. But the truth is, we’re not there yet. There’s still so much work to do, and we can’t lose momentum now.
Why does this matter so much to me? Because I want my daughter to have a future.
I want Emmy to say her first words. I want her to call me “Mama.” and for my husband to hear "Dada".
I don’t want to live in fear of a simple cold or sleepless night triggering a seizure.
I don’t want her to suffer because she can’t tell us what she needs and ends up hospitalized or worse.
I want her to grow up and sit in the same classroom as all the kids we had playdates with when she was a baby.
The future we dream of for Emmy is possible. But only if we keep pushing forward—funding research, preparing for clinical trials, and keeping the amazing scientists and doctors motivated to continue this fight with us. We’re so so close but can only get there if we can afford to get there.
So I’m asking for your help. Please:
💜 Donate if you can—even $1 helps.
💙 Share this post to help spread awareness about SYNGAP1.
💚 If you want to do more—host a fundraiser, volunteer, or learn more—reach out to me.
We can’t do this alone, but together, we can make a difference. Thank you for reading, for caring, and for supporting Emmy and so many kids like her.
Let’s give our children the future they deserve.
Donate below:
https://lnkd.in/eU_9Ke8j
