News

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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South Dakota Bike Run

What a wonderful time! On Monday, August 9, 2010, Lily Anna Blu’s grandparents held a bike run and auction at the Mystic Hills Campground in Deadwood, South Dakota.   They raised over $6,000. The entire event was organized within 2 weeks! The event was so…

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2nd Annual Walk A Thon Michigan

With the support of the Richmond Lions Club, the 2nd Annual Walkathon for CDKL5 Research was another successful event!  The weather could not have been more perfect.  We had around 200 friends and family in attendance – including three CDKL5 families from Michigan, one from…

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Fundraiser for Kimmie

  Kimmie Bussler is a five year old little girl from Trenton, Michigan who is affected by CDKL5.  Her family held a fundraiser in her honor on Sunday, July 18, 2010 at Lions, Tigers, and Beers Sports Club in Wyandotte, MI. All proceeds from the…

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2nd Annual River Hopping for a Cure

  MaryLouise Baker, friend of IFCR, hosted the 2nd Annual River Hopping for a Cure on July 11, 2010 in Mount Pleasant, Michigan.   She started this event to raise awareness about CDKL5 and to raise money for the International Foundation for CDKL5 Research. There…

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Lemonade to Help Little Avery

Avery Rose Leopoldino looks like any other toddler, with wavy hair, wearing sunglasses, a summer dress and sandals, but after suffering seizures, she has been diagnosed with a rare condition, She has CDKL5, a mutation on her X chromosome that affects only 200 girls worldwide,…

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