Newsroom

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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Pajama 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…

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Concert 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.…

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Kiera’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…

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The 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…

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IFCR 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…

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Bowling 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…

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We 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…

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