News

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…

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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…

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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!

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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…

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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…

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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…

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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!  

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IFCR Announces 2012 Grant Program

IFCR proudly announces its the 2012 Grant program: The International Foundation for CDKL5 Research has committed $150,000 in grants for clinical research projects to begin studying seizures, gastrointestinal and cardiovascular issues as they relate to CDKL5. In addition, IFCR is pledging an additional $200,000 in…

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Challenge to match $20,000 anonymous gift

As a foundation, we are very excited to inform you of a wonderful opportunity. We have received a very generous, anonymous corporate donation. This company made a $20,000 gift, and has challenged us to raise funds to match this amount – over the next two…

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The IFCR is now a member of NORD

The International Foundation for CDKL5 Research is very happy to announce that we are now a member of the National Organization for Rare Disorders (NORD). NORD is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through…

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