STXBP1 Community Connect

Connect with Your STXBP1 Community

The STXBP1 Foundation is proud of the huge interest in our latest initiative: STXBP1 Community Connect

This new program provides opportunities for parents and caregivers to connect, educate, and amplify helpful information on STXBP1-related disorders together.

We recently launched 4 new community-related webinars and virtual sessions designed to bring us together to learn, share, and keep moving forward faster as a STXBP1 community.

Now we are rolling out our latest resource intended to help with connections, support, and insights at the local and regional levels - STateXperts.

It’s only with your continued and active participation that our community will make a bigger difference in our drive to cure STXBP1-related disorders.

Introducing STateXperts

STXBP1 Community Connect has just launched a new resource for our parents and caregivers that focuses on helping with connections, support resources, and education for STXBP1-related disorders at the local, state, and regional levels in the US.

STateXperts - STXBP1 State Experts - is run by STX parents who are eager to share what they have learned about the programs, resources, and services where you live. We currently have 21 states up and running already.

  • Find resources

  • Learn and share helpful insights

  • Build connections with other STX parents and caregivers

Past Community Connect Events

Here’s what our community has enjoyed already since we launched

October

  • Let’s Chat About AAC (Augmentative and Alternative Communication) devices
    (watch the recording here)

  • Virtual STXBP1 Family Meet & Greet

September

  • Kick Off Virtual STXBP1 Family Meet & Greet

  • Back to School with IEPs Info Session with Erin Prosser

  • Get Ready Clinical Trial Readiness Webinar
    (watch the recording here)

  • Cerebral/Cortical Visual Impairment (CVI) informational webinar with our partners at CVI Now
    (watch the recording here)