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The beginnings of CDKL5
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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

Address
IFCR
P.O. Box 926
Wadsworth, Ohio 44282

Phone
330-612-2751 or
630-926-1189
 
Fax
734-426-7790
 
Family Support Regional Representatives
 
Patti Waszkiewicz -  pattiw@cdkl5.com; cell :631-807-0762
East Region (ME,VT,NH,MA,RI,CT,NY,NJ,PA,DE,MD,VA,WV)
 
Susan Parks - sparks@cdkl5.com; cell:  813-215-8466
Southern Region (NC,SC,GA,FL,AL,MS,LA,TX,OK,AR,TN, Puerto Rico)
 
Martha Boyles - mboyles@cdkl5.com; cell: 859-533-7131
Midwest Region (ND,SD,NE,KS,MN,IA,MO,WI,IL,MI,IN,KY,OH, Canada)
 
Kim Nothdurft - knothdurft@cdkl5.com
Western Region (ID,MT,WY,NV,UT,CO,AZ,NM, HI)

Amanda Jaksha - ajaksha@cdkl5.com
Rocky Mountain Regional Representative
 
Rick & Cynthia Upp - the7upps@comcast.net; cell - 509-879-6371 
Pacific Coast Representatives (CA, OR, WA, AK)
 
Italy
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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