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Glyn's Gift

The beginnings of CDKL5

IFCR celebrates 5th Anniversary with a New Campaign

It has been 5 years since a group of parents set out to find a cure for their children. These parents ... Learn More

GoodSearch: You Search...We Give!

Contact Us

The IFCR is working hard to bring you the most current and up-to-date information about CDKL5 disorders. Please contact us regarding any questions you may have. We are happy to help you.

IFCR Board of Directors
Katheryn Elibri Frame, DO – President -
Melissa Ralston – Secretary -
Karen Utley – Treasurer -
Kelly Barnes
Dustin Chandler
Amanda Jaksha
Kristin Leopoldino
Kim Nothdurft

Learn more about the IFCR's Board of Directors

P.O. Box 926
Wadsworth, Ohio 44282

330-612-2751 or
Family Support Regional Representatives
Patti Waszkiewicz -; cell :631-807-0762
Susan Parks -; cell:  813-215-8466
Southern Region (NC,SC,GA,FL,AL,MS,LA,TX,OK,AR,TN, Puerto Rico)
Martha Boyles -; cell: 859-533-7131
Midwest Region (ND,SD,NE,KS,MN,IA,MO,WI,IL,MI,IN,KY,OH, Canada)
Kim Nothdurft -
Western Region (ID,MT,WY,NV,UT,CO,AZ,NM, HI)

Amanda Jaksha -
Rocky Mountain Regional Representative
Rick & Cynthia Upp -; cell - 509-879-6371 
Pacific Coast Representatives (CA, OR, WA, AK)
Massimo Quaranta - ; phone +39 346 967 3091
Support for international countries not listed above, please contact Melissa at

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