STXBP1 Investigators and Family Meeting (SIFM)

The inaugural STXBP1 Investigator and Family Meeting held on June 21, 2019 and June 22, 2019  will bring together researchers and families of individuals with STXBP1 encephalopathies, foster development of the STXBP1 community and accelerate the search for a cure.

STXBP1 has become one of the more commonly diagnosed genetic causes of epileptic encephalopathy in children, accounting for 5% of positive epilepsy cases in a recent study.  This conference is designed to foster interaction and in-depth discussions among researchers and clinicians to further research and innovation in this field. The meeting will also provide opportunities for researchers and the patient community to connect. The goal is to develop a research strategy and scientific roadmap for the STXBP1disorder, and to encourage collaborations and initiatives to support achievement of the roadmap and advancement in the field.

Friday, June 21 will be dedicated to Investigators ONLY and will be held at CHoP. This is where Investigators will have the opportunity to present STXBP1 research and interact with other scientists studying the gene. Investigators will have a chance to interact with our families during the banquet and poster session that night.

On Saturday, June 22, our sessions will be held at the Sheraton University Center and here is where parents, family, and other caregivers will have an opportunity to learn about research that is built and presented for the non-scientific community.

Can’t attend? This event will be live streamed! Find the live stream link here: http://stxdisorders.org/sifm2019/

Your participation at the SIFM is 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.