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Glyn's Gift

The beginnings of CDKL5
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Dance for the Cure

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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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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
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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