2024 STXBP1 Summit+

We are saving a seat for you at the 2024 STXBP1 Summit+ Researcher & Family Meetings this summer. We’re in the Philadelphia area again for our annual conference and we will be holding our meetings at the Drexelbrook Event Center in Drexel Hill, PA.

Conference Registration is Open

Family Registration
$25 Early Bird Registration ends May 25, 2024
$35 Registration increase begins May 26, 2024
Registration closes June 14, 2024

Researchers have a dedicated two-day meeting on July 18 & 19

Detailed Research Roundtable Agenda is Here

Researchers only please register using the Researcher Registration button below.

Family Meeting at a Glance

Friday, July 19
Family Check In & Research Opportunities
Star Themed Researcher/Family Dinner & Dance Party
(costumes optional and encouraged)

Saturday, July 20
Breakfast
Foundation Kick Off
Clinical Updates
Lunch
STARR Study Updates
Community Engagement
STXBP1 Studies
Industry Presentations
Evening Social Time
(Including Grandparents Social Event)

Sunday, July 21
Breakfast
Family/Caregiver Support Sessions
Closing Session (done by 12:00pm)

At the Event ...
Social Opportunities for Families
Family Hospitality Room with toys
Lounge with microwave & refrigerator
Private Changing Room
Family Restrooms
Dedicated Space & Activities for Siblings
Genetic Counseling Appointments
Research Opportunities

Hotel Reservations

Stay with us at the Holiday Inn & Suites

  • The Hotel is right next door and connected to the event center

  • Our special discounted group rate of $169 is available for the dates of July 17-21, 2024

  • There is free parking

  • And, lots of other great onsite amenities including a pool, kids meal specials, guest self-laundry and more

  • Book now for the discounted rate

Clinic Days at ENDD on July 22 & 23

We are thrilled to announce clinic days at the ENDD center at Children's Hospital of Philadelphia, following the STXBP1 Summit+ Family Meeting!

The Center for Epilepsy and NeuroDevelopmental Disorders (ENDD) is a collaboration between Children's Hospital of Philadelphia (CHOP) and University of Pennsylvania. In collaboration with the STXBP1 Foundation’s STARR study, the ENDD center at CHOP is one of the multisite centers conducting the natural history study, which is critical to understand how people with STXBP1 develop, learn, and experience symptoms over time. The information gained from this study will be used to inform future clinical trials and to improve the information we give to families about what life is like for people living with STXBP1 related disorders.

During your visit, your child will be seen by a multidisciplinary team - Neurologists, Developmental and Behavioral Pediatricians, Physical and Occupational Therapists, and Genetic Counselors. A research EEG system will also be available for study participants.

For more information, or to visit the clinic at CHOP, please email ENDD@CHOP.EDU

Please provide the following information in your email:

  • Child’s name

  • Child’s age

  • From where you will be traveling to see us

  • Genetic diagnosis with genetic testing report if you are new to CHOP (please send email even if you do not have this on hand)

The ENDD team is happy to respond to your emails and questions.

More information on the STARR study is available here