The STXBP1 Summit+ Family Meeting took place on July 22-23 in Westminster, Colorado with a great turnout.

STXBP1 families heard from researchers and clinicians who are working to improve the lives of STXBP1 patients and families. Families also had the opportunity to attend our “Be Ready. Be Real.” breakout sessions on benefits and advocacy while learning from other parents.

It was certainly a weekend full of information and fun. And, we’re already planning for next year!

Meeting at a Glance
Saturday, 7/22: Keynote, Research Updates, Family Dinner
Sunday, 7/23: Family Breakout Sessions

See the agenda online or as a PDF

 

All sessions were recorded and the Scientific sessions from Saturday were even Livestreamed on YouTube.

Planning Details

  • Hotel reservations are closed

  • Summit+ virtual registration is closed

  • Summit+ onsite registration is closed

STXBP1 Foundation Summit+ Covid-19 Information

COVID-19 POLICIES: STXBP1 Foundation will strictly follow COVID-19 safety procedures as outlined by our conference venue, the Centers for Disease Control and Prevention, the World Health Organization, the Occupational Safety and Health Administration, the State of Colorado, the City of Westminster, and any other governing Federal or local government agency. These COVID-19 policies and procedures may include but are not limited to personal sanitization, mandatory face covering, and social distancing. These policies and procedures may be modified at any time in advance of or during the STXBP1 Summit+ and are available at www.stxbp1disorders.org.

During the Summit+
All attendees, speakers and staff are expected to follow the posted mandates, such as face coverings and social distancing.  In order to address the medical vulnerabilities of our STXBP1 population, we are asking all Summit+ attendees to take a COVID test before traveling to the event. The U.S. Food and Drug Administration (FDA) is now advising people to perform repeat, or serial, testing following a negative result on any at-home COVID-19 antigen test, to reduce the risk an infection may be missed (false negative result) and to help prevent people from unknowingly spreading the SARS-CoV-2 virus to others. The FDA recommends repeat testing following a negative result whether or not you have COVID-19 symptoms. This means people should use multiple tests over a certain time period, such as 2-3 days, especially when the people using the tests don't have COVID-19 symptoms. If you test positive, or are experiencing COVID symptoms, we ask that you stay home and not travel to the event, in order to protect the health of the other attendees.

After the Summit+
Please self-monitor for signs and symptoms of Covid-19 for 10 days after participating in the event and contact the STXBP1 Foundation if you develop symptoms of, or test positive for, Covid-19.  All participants will be notified of any potential event exposure.

For questions regarding these policies, please contact Cristina Brennan.