CDKL5 Forum 2019

The CDKL5 Forum is an annual “by-invite-only” event hosted by the Loulou Foundation to report on the progression of the CDKL5 Deficiency Disorder field. IFCR board members, Rick Upp and Amanda Jaksha, and Science Director, Heidi Grabenstatter, attended this event that includes scientists, industry representatives, clinicians, and nonprofit leaders invested specifically in CDKL5 Deficiency Disorder (CDD). It was clear that the rapid progress occurring in CDD research …

IFCR Launches Two New CDKL5 Centers of Excellence

The International Foundation for CDKL5 Research is proud to announce the launch of two new CDKL5 Centers of Excellence in the Children’s Hospital of Philadelphia and the University of California Mattel Children’s Hospital in Los Angeles. The Philadelphia CDLK5 Center of Excellence was made possible due to the generous support from the Lauren Mary Francis Foundation.

CDKL5 PFDD Webinar

Join us on Tuesday, August 6, at 8:00 pm ET for a webinar to learn more about our upcoming CDKL5 Deficiency Patient-Focused Drug Development (PFDD) meeting. On November 1, 2019, IFCR and the LouLou foundation will co-sponsor this externally-led meeting for CDD. This is a once-in-a-lifetime opportunity for caretakers to share the patient voice with a variety of stakeholders interested in developing treatments for CDD.

2019 NORD Living Rare Forum

Karen Utley was honored to participate in the National Organization of Rare Diseases’ NORD Living Rare Forum in Houston, Texas. Several researchers stopped at the table and talked with her …

CDKL5 Fenfluramine Study

NOW OPEN!

CDKL5 Fenfluramine Study

This study will be enrolling 10 patients, ages 2-35 years old, with a confirmed genetic/clinical diagnosis of CDKL5 Deficiency Disorder (CDD) in an open-label trial of fenfluramine for seizure control. Patients will be titrated over 14 days to a dose of ZX008 0.8 mg/kg/day (maximum dose 30 mg/d).