News & Family Stories

Newsletter Archive

Harvard Brain Tissue Resource Center (HBTRC) Statement

CDKL5 Publication Breakdown: Epileptic Spasms in CDD

Jesus Gonzalez Appointed Inaugural Executive Director of IFCR

CDKL5 Alliance Membership Update

CDKL5 Mom Walks to Remember

The Lancet Neurology Publishes Review of Clinical Features, Diagnosis and Management of CDKL5 Deficiency Disorder

Sodium channel blockers are not to be dismissed for the treatment of seizures in CDKL5 deficiency disorder

Gene Therapy: A Conversation With Drs Benke & Ultragenyx

Working towards strong clinical trials for CDKL5 Deficiency Disorder

Marinus Expanded Access Program for Ganaxolone

Base editing to correct the root cause of genetic disease: A breakthrough for progeria patients and a blueprint for future approaches in other genetic diseases.

Spotlight on Skylar

Raise Awareness Volunteer Fundraise Participate in Research