In many cases, insurance covers the bare minimum for patients with rare genetic disorders like SCN8A, which leaves families footing the bill for necessary…
Read ArticleTen years ago, when I started TCSF my daughter Esmé was seizing on average 15 times a week and struggling with extreme medical fragility.…
Read ArticleIn 2019, we all left Baltimore, Maryland thinking we’d hug each other once again in 2020, but we all know what happened next…COVID-19 destroyed…
Read ArticleAll About Kacie:Have you ever felt that you’ve lived multiple lives within one lifetime? For example, the person you were while in high school…
Read ArticleHello SCN8A Community, Founding The Cute Syndrome Foundation and running it these last almost 9 years has been one of the greatest honors of…
Read ArticleHead over to the portal to sign up here: http://bit.ly/TCSFciitizen SIGN UP NOW Being a parent to an SCN8A warrior can be overwhelming. In the…
Read ArticleEverything in 2020 felt different, didn’t it? This year The Cute Syndrome Foundation’s 6th Annual Clinician, Researcher, and Family Gathering was no exception…as we moved…
Read ArticleHave you ever wondered what TCSF is? Where did it come from and who started it? With so many new faces in the community…
Read ArticleLast year Luke Pitino, who was diagnosed with SCN8A epilepsy in his first year of life, and his family raised $71,000 for the Epilepsy…
Read ArticleThe Cute Sydnrome Foundation is thrilled to announce that starting on September 30th we will be holding a five-week Clinical Trial Readiness Educational series…
Read ArticleJoin the TCSF Family Network to receive updates on educational programming, grants, clinical trials, and more.