2022 STXBP1 Summit+ Agendas
Daily agendas Are subject to change
Our STXBP1 Summit+ will bring together our STXBP1 families and researchers. Parents, caregivers and community stakeholders will learn the latest information on STXBP1 from top medical professionals and researchers.
Participants will also have the unique opportunity to network with both scientists and families of individuals with STXBP1 disorders.
If you can’t make it to the conference, the Saturday Family Meeting sessions will be livestreamed in real time on our YouTube channel. Register now to be ready. They will also be recorded and available on our website one week after the event ends. The Research Roundtable sessions will be recorded.
PLEASE NOTE: NO CHILDCARE WILL BE PROVIDED - It is imperative that those attending the Family Meeting sessions on August 20, benefit from the important content being presented, and to ensure quality recordings of each presentation by the A/V team. All registrants will have access to a Family Hospitality Room to use during the Family Meeting. Parents/guardians/caregivers are encouraged to utilize the Family Hospitality Room to prevent disruption of presentations during the Family Meeting. Parents who choose to have their children attend the Family Meeting, are expected to monitor their children's behavior, and exit the room as necessary in order to prevent disruption.
STXBP1 Foundation Summit+ Covid-19 Information
Guidelines and Mandates
The health and safety of all attendees, speakers and staff is a top priority. The STXBP1 Foundation’s policy is to abide by all Covid-19 mandates required by the event venue, the City of Philadelphia, and the CDC (Centers for Disease Control and Prevention). All guidelines can be found below and will be continuously monitored and updated up to and throughout the dates of event.
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 us at cristina.brennan@STXBP1Disorders.org
Useful Links
Bellevue Hotel: Note that the hotel does not add additional mandates [more]
City of Philadelphia: FYI - this link is the most informative [more]
CDC: Select “Pennsylvania” and then select “Philadelphia County” from the drop-down options [more]
