STXBP1 Investigators and Family Meeting (SIFM)

The STXBP1 Foundation and the Center for Cellular and Molecular Therapeutics (CCMT) hosted our 1st STXBP1 Investigators and Family Meeting (SIFM) on June 21-22, 2019 in Philadelphia. 

The results from our two days of meetings and the related surveys are here.

And the recordings and other collateral from the Saturday Family Day is below. You can watch the full recording of the whole day or choose individual sessions from the archive. 

Individual session recordings (1-12)
Posters (1-5)
STXBP1 Snapshot brochure from our Simons Searchlight registry

Event Description
Friday, June 21 was dedicated to Investigators only and held at CHoP. This is where Investigators had the opportunity to present STXBP1 research and interact with other scientists studying the gene. Investigators were able to interact with our families during the banquet and poster session that night. On Saturday, June 22, our sessions were held at the Sheraton University Center and that is where parents, family, and other caregivers had the opportunity to learn about research that is built and presented for the non-scientific community.

Your participation at the SIFM was invaluable to the STXBP1 Foundation as discussions and information gleaned will assist the Foundation and the Scientific Advisory Board to build a scientific roadmap. This output will inform future decisions and drive future investments by the STXBP1 Foundation. Through this interaction we hope to drive research in a manner that has the greatest potential to provide better therapies and ultimately, a cure.

It is our belief that the relationships formed between researchers and families will improve the quality of research and ultimately, a cure.

See the agenda for our Family Days here: STXBP1_SIFM_Agenda_Family_Final

And, finally, a big thank you to our wonderful partners and their support for helping make this conference possible.