The International CDKL5 Database releases preliminary findings!
The International CDKL5 Database is a joint effort between the International Foundation for CDKL5 Research and scientists in Australia, led by the research team of Stephanie Fehr, Dr. Helen Leonard and Dr. Jenny Downs. This database is a critical component to our research efforts and was launched…Read More
Catie and the Little Green Dress
Catie and her mom, Amy, were featured on a Medical News segment with Channel 12’s Liz Bonis. They were also featured on the Cincinnati Children blog on June 21, 2013 written by the Cincinnati Children’s New Team. (The following is take from the above blog) There is a little…Read More
CDKL5 presented before the US Congress
Dr. Brad Wenstrup (R), representative from Ohio, presents CDKL5 before the Unites States House of Representatives on June 17, 2013, the inaugural CDKL5 Awareness day. IFCR thanks Dr.Wenstrup for helping to raise awareness of CDKL5 and getting CDKL5 officially recognized in the congressional record. This is an…Read More
Karly Goes to Prom
Missing one gene should not mean a little girl has to miss her prom When Karen Diller watched her son, Kyle, go to prom several years back she said “I guess Karly will never have a date to her prom” and Kyle said right away…Read More
Patti Waszkiewicz: International Foundation for CDKL5 Research
The following article appeared in the Long Island Press column blog by Beverly Fortune on March 30, 2013: February 28th marked Rare Disease Day, an international day of advocacy for those living with an uncommon medical malady. Patti Waszkiewicz of Holbrook spent the day at…Read More
CDKL5 Moms on the Today Show
On Saturday March 2, 2013 over 30 moms from around the world gathered in NYC to meet and bond as moms of children with CDKL5. Watch them on the Today Show!Read More
Inaugural CDKL5 Research Symposium for Clinicians and Scientists
The International Foundation for CDKL5 Research is proud to announce it’s inaugural CDKL5 Research Symposium on Wednesday June 27, 2012 in New Orleans, LA, immediately following the Rett World Congress. Save the Date! CDKL5 Research Symposium June 27, 2012 8:00am to 3:00pm Intercontinental Hotel New…Read More
The Little Green Dress
Imagine the journey you have been on with your angel from the beginning. A journey of uncertainty, appointments, medical professionals some you have never heard of and some you wish to never hear of again! Equipment that you never dreamed of and drugs you can…Read More
Amber Meets the Queen!
A YEOVIL girl who defied expectations that she would never walk presented the Queen with a posy of flowers yesterday. Amber Partridge, seven, was born with a rare genetic disorder, known as CDKL5, which affects fewer than 200 people worldwide and saw her suffer up…Read More
Extra! Extra! IFCR has an ad in the USA Today!
IFCR is excited to announce that we will have an ad in USA Today on Thursday April 19th! We encourage everyone to go out and get a copy, or two, and share with your friends and family!Read More