News

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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