Two weeks ago, Praxis Precision Medicines invited TCSF to their home base in Cambridge MA to talk to them about SCN8A community and to see how they can help—not just to help better treat SCN8A, but to do so as well as possible because they understand our experiences living with it.
Our volunteers, Karen and Colleen (both members of the executive leadership committee), and Hillary (our founder and director), went to meet them—and they brought along three amazing young SCN8A advocates: their girls, Lily, Emma, and Esmé. Each of these girls represents a different part of the SCN8A spectrum—Lily, who requires complete assistance and experiences ongoing regular seizures; Emma, who can speak for herself (and the other members of her community); and Esmé, who is beginning to communicate with a talker and self-propel with a wheelchair.
Our team is always ready to educate industry partners about our community, and we are thrilled to see the dedication from Praxis to engage with our community at such a meaningful level. Thank you for having us, Praxis!
After the visit, all three families spent a beautiful day together in Boston. The people within our community are spread out all over the world. Whenever they are able to meet up, they make magic happen!