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Glyn's Gift

The beginnings of CDKL5
News

Rare Epilepsy Network (REN) Registry is Open for Enrollment

We are excited to announce that the Rare Epilepsy Network (REN) Registry is open for ... 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

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,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
Western Region (NV,UT,AZ,NM, HI)

Amanda Jaksha - ajaksha@cdkl5.com
Rocky Mountain Region (CO, NE, WY, IA, ND, SD, MN, KS)
 
Rick & Cynthia Upp - the7upps@comcast.net; cell - 509-879-6371 
Pacific Coast Region(CA, OR, WA, ID, MT, 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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