Natural History Study

Now enrolling: The objective is to gather as much data as possible about children and adults with CDKL5, Rett syndrome, and other Rett-related disorders...

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Newly Diagnosed?

Check out our resources for families!

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HOPE • LOVE • CURE

Our mission is to lead the way in finding a cure and treatments for CDKL5 disorder. Through funding global research efforts, and increasing awareness of CDKL5 disorder, we hope to enhance the quality of life for those affected by CDKL5 disorder. We do this by providing a variety of information, programs, and services.

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2-3 Children

diagnosed per week

Natural History Study

New sites enrolling now

$2.5 Million

raised for CDKL5 research

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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.

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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

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June is CDKL5 Awareness Month

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

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Thank You to the Giving Doll

The IFCR would like to thank The Giving Doll of Wadsworth, Ohio for generously donating their beautiful, handmade dolls to our new families.

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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!

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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?

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Events

Aug
18
All in Stride – Evie’s CDKL5 Journey

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…

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Sep
29
Toast to a Cure 2018

Join us for a evening of great food, local wines and brews, and fabulous Irish music with Liam’s Fancy. You can help us Shoot for the Moon to raise funds for the IFCR!

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Oct
20
7th Annual CDKL5 Walk-A-Thon

Family Event, Music, Entertainment, Food, Games, Prizes, Face Painting, Contest and Fun for the whole family. Everyone plan to join us and help support a great cause.

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