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Nonprofit

STXBP1 Foundation

A nonprofit started by parents to raise awareness, fund research and work toward a cure for STXBP1-related disorder. It gives families information, resources and a contact list.

  • Online OK

Saved in this browser only.

What they do

Parents can join the Contact List and other relatives can join the Mail List. Everyone can use the family resources and newly diagnosed pages, and volunteer in roles such as events, fundraising, outreach and social media.

Who it is for

Who can join
Open to anyone
Who is there
Families with children

When and where

The foundation holds a family summit each July, and posts other events and webinars on its events page.

Mailing address (IRS)

A mailing address on file, not a meeting place. We show only the ZIP code.

ZIP code
19130
Part of the city
Central

We do not have a meeting place for this group yet.

You can join online.

Your first visit

Feeling unsure the first time is normal. Most groups are glad when someone new walks in.

First step: Parents and primary caregivers: register on the Contact List at stxbp1disorders.org/contact-list. Other relatives and community members: join the Mail List instead (grandparents can join the Grands Society). To volunteer, fill in the volunteer form or email info@stxbp1disorders.org with the subject Volunteer..

You need to sign up first.

What to expect

The Contact List is a form, and the page says the information is used to share research, trial and resource news and to help families connect. The foundation's 2026 family summit ran July 16 to 19 in Philadelphia, with a family meeting July 17 to 19. Volunteers can choose from ten roles, including events, fundraising, graphic design, grant writing, social media and outreach to families.

Tips for your first visit

  • Use the Contact List only if you are a parent or primary caregiver; other relatives should use the Mail List.
  • If the volunteer form does not work, email info@stxbp1disorders.org with the subject Volunteer.

Newcomer welcome

Fine for newcomers, but you may need to speak up (3 out of 5). Why we say this: Parents and caregivers can join a public Contact List, and the volunteer page invites people to sign up by form or email. The page does not state time commitments or any requirements for volunteers..

Cost and commitment

Cost
Cost not known yet

Access and languages

Wheelchair access
We do not know yet. Ask the group before you go.
Languages spoken
We do not know yet which languages are spoken.

Requirements

We found no special requirements. Ask the group if you are not sure.

How to reach them

We copy contact details as the group or a public source published them. Each one shows where it came from.

Sources and last check

Checked by our research team on October 8, 2026. This was a closer look, including what a first visit is like.

Last seen active
September 2026 (See the evidence)
Last checked by our team
October 8, 2026
Status
Active
Our confidence in this listing
Medium

Help us keep this right

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