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Glyn's Gift

The beginnings of CDKL5
Our Next Event

7th Annual Vivi's Drive for a Cure Golf Outing

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Rare Disease Day Rally in Austin, TX

The IFCR celebrated Rare Disease Day with a rally at the State Capital of Austin, ... Learn More

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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 - keframe@cdkl5.com
Melissa Ralston – Secretary - mralston@cdkl5.com
Karen Utley – Treasurer -  kutley@cdkl5.com
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 -  pattiw@cdkl5.com; cell :631-807-0762
Susan Parks - sparks@cdkl5.com; cell:  813-215-8466
Southern Region (NC,SC,GA,FL,AL,MS,OK,AR,TN, Puerto Rico)
Karen Utley - kutley@cdkl5.com; cell: 979-482-6252
Southern Region (LA, TX)
Martha Boyles - mboyles@cdkl5.com; cell: 859-533-7131
Midwest Region (MO,WI,IL,MI,IN,KY,OH, Canada)
Kim Nothdurft - knothdurft@cdkl5.com; cell: 602-723-4854
Western Region (NV,UT,AZ,NM, HI)

Amanda Jaksha - ajaksha@cdkl5.com; cell: 970-576-2740
Rocky Mountain Region (CO, NE, WY, IA, ND, SD, MN, KS)
Rick & Cynthia Upp - rcupp@cdkl5.com; cell - 509-879-6371 
Pacific Coast Region (CA, OR, WA, ID, MT, AK)
Massimo Quaranta - massimoquaranta58@alice.it ; phone +39 346 967 3091
Support for international countries not listed above, please contact Melissa at mralston@cdkl5.com

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