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…
Read MorePajama Day to Benefit the IFCR
Each month, Central Elementary School in Grand Rapids, MI hosts a donation day with each grade (K-5)taking its turn in selecting the charity and the special day. For the month of November, Ms. Kristeen Hendsbee’s 4th grade class chose to donate to the IFCR to…
Read MoreConcert at the Kate Benefit Concert
In conjunction with the town of Old Saybrook, Youth and Family services and Bills Seafood, a fabulous evening took place on June 11, 2011 at the Kate in order to support “Team Avery” in their efforts to raise both awareness and funding for CDKL5 research.…
Read MoreKiera’s Chuck Wagon Supper Fundraiser
On April 9, 2011, Kiera’s Chuck Wagon Supper Fundraiser for the International Foundation for CDKL5 Research was held at Eckerts Country Restaurant in Belleville, IL. Activities for the evening included silent auction, a raffle and 50/50 drawing. The host restaurant served a delicious meal and…
Read MoreThe IFCR takes part in Rare Disease Day
February 28, 2011 is Rare Disease Day throughout the world. This year’s theme is “Rare but Equal” which will highlight rare diseases and health inequalities. On that day hundreds of patient organizations from more than 40 countries worldwide will be organizing awareness-raising activities and converging…
Read MoreIFCR has won $50K in the Pepsi Refresh Project!
It’s official! The IFCR is the recipient of $50,000 in the Pepsi Refresh Project for the month of October! You can now view Cure CDKL5 under Funded Ideas for the month of October on the Pepsi Refresh page. In addition to winning the grant, many…
Read MoreBowling Fundraiser in Ann Arbor, MI
The University of Michigan chapter of the Academy of Student Pharmacists held a fundraising Bowling Event at Colonial Lanes in Ann Arbor, MI to benefit IFCR. This event was held in honor of Kiera F, the 5 yr old daughter of one of the U…
Read MoreWe are a Finalist in the Pepsi Refresh Project!
The IFCR received a phone call today from Pepsi informing us that Cure CDKL5 has officially been moved into the final Top 10 for the month of October! One of the previous Top 10 winners in October has been disqualified, and since we finished at #11, we…
Read MoreBlue Leprechaun Sports Bar – Drinks & Appetizer Fundraiser
Phi Delta Chi, a University of Michigan Pharmacy fraternity, held a drinks and appetizer fundraiser to benefit CDKL5 research and the IFCR. This special event was held in honor of Kiera F., the daughter of one of the members of the U of M Pharmacy faculty. …
Read MoreThe IFCR Awards Its First Research Grant
The International Foundation for CDKL5 Research is pleased to announce that it has just awarded its first research grant. The grant was awarded to Elena Amendola, PhD, from the European Molecular Biology Laboratory in Italy. The project “Model of CDKL5 Rett syndrome” will occur in…
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