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).

CDD Database Collaboration

INTERNATIONAL CDKL5 DISORDER DATABASE (ICDD) AND CDKL5 DEFICIENCY DISORDER INTERNATIONAL PATIENT REGISTRY AT ODC ANNOUNCE DATA COLLECTION COLLABORATION

We are pleased to announce to the CDKL5 Deficiency Disorder (CDD) community that the International CDKL5 Disorder Database (ICDD), founded and directed by Dr. Helen Leonard and Dr. Jenny Downs in partnership with the International Foundation for CDKL5 Research (IFCR), and the CDKL5 Deficiency Disorder International Patient Registry, based at the University of Pennsylvania’s Orphan Disease Center (ODC), have outlined an agreement that will allow the two groups to collaborate on complementary projects collecting information from CDD patients.

NIH Awards First R01 Grant for CDKL5 Study

EXCITING NEWS! YOUR RESEARCH DOLLARS AT WORK!

The National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) has awarded a five-year R01 research grant, entitled “Pathogenic Studies of CDKL5 Disorder,” to Dr. Zhaolan (Joe) Zhou, Principal Investigator (PI), at the University of Pennsylvania Perelman School of Medicine, and Dr. Douglas Coulter, co-PI, at the University of Pennsylvania Perelman School of Medicine and Children’s Hospital of Philadelphia.

Karen Utley to Succeed Dr. Katheryn Elibri Frame as President of the International Foundation for CDKL5 Research

The International Foundation for CDKL5 Research announces new president

June is CDKL5 Awareness Month

June is CDKL5 Awareness Month and June 17th is CDKL5 Worldwide Awareness Day

Thank You to the Giving Doll

CDKL5 Natural History Study

Natural History Sites Now Enrolling!

Jan. 1, 2017 – Dec. 31, 2019

Knowledge that will be found  in this natural history study is essential for developing more efficient clinical trial designs. Check out the 15 enrolling sites and find one close to you!

iPS Disease Modeling and Drug Development in CDKL5

If you have watched a health report on the news lately, you can hardly avoid the mention of stem cells and regenerative medicine. What do Zika virus, Parkinson’s Disease, spinal cord injuries, heart disease, and CDKL5 Disorder have in common?

3rd International CDKL5 Family Conference & Science Symposium

3rd International Family Education and Awareness Conference at Eaglewood Resort and Spa in suburban Chicago, IL from June 24-26, 2016. 3rd International Family Education and Awareness Conference  CONFERENCE PROGRAM WITH FILE LINKS EMBEDDED CONFERENCE PROGRAM | Subject to Change ONLINE REGISTRATION IS CLOSED | Purchase tickets for all three days or single…