Family Support Representatives

Family Support Representatives reach out to CDKL5 families and caregivers to inform them of helpful resources and offer support. Please feel free to reach out to the FSR for your state (see below).

If you would like to learn about volunteering as an FSR, please contact us.

Amanda Jaksha
Email: ajaksha@cdkl5.com
Cell: 970-576-2740
Supports: Colorado

Amanda Nicholson
Email: amandationna78@yahoo.com
Cell: 859-307-7067
Supports: Kentucky, Indiana, Ohio, Virginia, Washington DC, Maryland

Courtney Froy
Email: coukum@yahoo.com
Cell: 770-265-4200
Supports: Georgia, South Carolina, North Carolina, Tennessee

Cynthia Upp
Email: cupp@cdkl5.com
Cell:509-879-6371
Supports: Washington, Montana, Oregon, Idaho

Diana Lee
Email: foraj2@mchsi.com
Cell: 815-481-4870
Supports: Wisconsin, Illinois, Minnesota, Iowa, Michigan

Jennifer Young
Email: jen.m.young@gmail.com
Cell:650-305-0145
Supports: California

Jodi Kelly
Email: jodikelly79@gmail.com
Cell: 774-479-2203
Supports: Massachusetts, Maine, New Hampshire, Rhode Island, Connecticut, Delaware

Karen Diller
Email: karendillr@hotmail.com
Cell: 717-263-9587
Supports: Pennsylvania

Karen Utley
Email: kutley@cdkl5.com
Cell: 979-482-6252
Supports: Louisiana, Texas, Mississippi, Oklahoma

Kerry Donovan
Email: kdonovan_beav@yahoo.com
Cell:631-965-0776
Supports: New York, New Jersey

Patricia Munoz
Email: patricia_munoz@fcch.com
Cell: 505-831-8841
Supports: New Mexico and Nevada

Randi Zaila
Email: rjzaila@gmail.com
Cell: 850-445-8442
Supports: Utah and Arizona

Susan Parks
Email: sparks@cdkl5.com
Cell: 813-215-8466
Supports: Florida, Alabama

Urvi Biyala
Email: urvi930@gmail.com
Cell: 636-578-7133
Supports: Kansas, Missouri, Nebraska, North Dakota, South Dakota