FIRES (Febrile Infection-Related Epilepsy Syndrome) is a subset of NORSE (New Onset Refractory Status Epilepticus). The primary distinction between the two is that FIRES presents with a fever 24 hours to two weeks before the onset of seizures. The NORSE Institute is a 501(c)(3) tax-exempt organization led by a Scientific Advisory Board who are truly invested in further research of NORSE and take this commitment to heart through ongoing open communication and the integration of patients and families in their research.
NORSE and FIRES are not well known and are under-researched. In most cases, there is no gene associated with the syndrome. Families like mine are looking for answers, but without funding, this syndrome continues to go under-researched, and our loved ones are left without answers. With the generous help of donors, we can change that. Please consider being the change that David and others like him need today.
https://give.cureepilepsy.org/campaign/616851/donate
David Fighting F.I.R.E.S. 