Newsroom

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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Blue 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.  …

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The 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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Benefit for Leah

A benefit was held on September 25, 2010 for Leah Rose Barnes. The benefit was a great success with all the proceeds going to the International Foundation for CDKL5 Research. We filled the Fairview American Legion with over 100 people.  There was great food and…

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Dr. Sumit Parikh Appointed to IFCR Scientific Advisory Board

The International Foundation for CDKL5 Research is pleased to announce that Sumit Parikh, MD has joined our Scientific Advisory Board.   Dr. Parikh is a neurometabolic and neurogenetics Staff Clinician at Cleveland Clinic. He specializes in the evaluation, diagnosis and treatment of developmental delay, neuro-degeneration…

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Splash for a Cure Recap

The 1st Annual Splash for a Cure was held Sunday, August 22, 2010, and it was a “splashing” success, raising over $4,000 for the IFCR! Held at the Hamilton High School swimming pool in Chandler, AZ, over 250 people came out to swim, have fun,…

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