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.

The International Foundation for CDKL5 Research announces new president

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

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!

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?

David is almost 14 years old and has endured well over 60,000 seizures with no treatments helping. He cannot walk, talk, nor feed himself, is wheelchair bound and 100% dependent on others to survive. But, we have hope. Due to…

  Join us for a family friendly 5K and 1 mile fun run. All proceeds benefit the International Foundation for CDKL5 Research. We welcome runners and walkers of all ages and abilities!  Click here to visit the Strides for Starfish Facebook page.

Join us for a one mile fun walk to raise awareness of CDKL5 Deficiency Disorder! We welcome walkers of all ages and abilities! Registration includes a t-shirt. Directly following the race we will have raffle that will include items donated…