IFCR Announces 2nd International Family Conference
International Foundation for CDKL5 Research (IFCR) Announces 2nd International CDKL5 Family Conference “Opening doors to discoveries… Hope is the Key” WADSWORTH, OHIO, February 20, 2014 –The International Foundation for CDKL5 Research (IFCR) is pleased to announce its Second CDKL5 Family Conference to be held from…
Read MoreNews 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…
Read MoreIFCR 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…
Read MoreGive 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…
Read MorePelham 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…
Read MoreSecond 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…
Read MoreJoint 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…
Read MoreThe 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 MoreCatie 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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