Newsroom

News from the CDKL5 International Database

Edited by Katheryn Elibri Frame, DO, President of IFCR The CDKL5 International Database is a vitally important research tool in which all families (worldwide) affected by CDKL5 are encouraged to participate.  IFCR has partnered with researchers Stephanie Fehr, Helen Leonard and Jenny Downs at the…

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IFCR President, Katheryn Elibri Frame, to speak at NORD Conference

Patient Advocates to Share Stories of Challenges, Hope at DIA-NORD Conference (the following article is taken from www.digitaljournal.com) Bethesda, MD (PRWEB) October 02, 2013 Katheryn Elibri, whose 7-year-old daughter has a rare genetic disease known as CDKL5 and has seizures almost daily, helped begin a foundation…

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Give Charlie a Chance

The following was taken from www.local12.com. Written by Liz Bonis. Updated: Wednesday, October 2 2013, 08:39 AM EDT Walton, Ky (liz bonis) —   Catie who’s now five and Charlotte, who goes by Charlie, were both born with a genetic condition called CDKL-5. Says Catie’s…

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Pelham family organizes skydiving fundraiser to help sick child

Pelham family organizes skydiving fundraiser to help sick child The following is posted from myfoxal.com Posted: Sep 24, 2013 10:40 PM EDT Updated: Oct 01, 2013 10:40 PM EDT By Vanessa Araiza – email PELHAM, AL (WBRC) – If you just met two-and-a-half-year old Carly…

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Second CDKL5 Center for Excellence Location Announced

For Immediate Release International Foundation for CDKL5 Research Announces Location of its  Second CDKL5 Center for Excellence     WADSWORTH, OHIO, July 30, 2013 —The International Foundation for CDKL5 Research (IFCR) is proud to announce that the location of its second CDKL5 Center for Excellence will…

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Joint Funding with the International Rett Syndrome Foundation (IRSF)

For Immediate release Wadsworth, OH  July, 29, 2013 — The International Foundation for CDKL5 Research is proud to announce co-funding of a grant with the International Rett Syndrome Foundation for a joint research project that is looking closely at the interaction between CDKL5 and MeCP2. It…

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Help Support CDKL5 Research with Label Daddy

For a printable brochure, click here

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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…

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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…

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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…

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