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Family Support Representatives

What Are Family Support Representatives?

Family Support Representatives (FSRs) reach out to CDKL5 families and caregivers to offer emotional support and understanding. Only someone on this CDKL5 journey can truly understand it, and we want to be there for you along your path.

FSRs also provide helpful resources and can inform you about useful IFCR tools; they cannot provide medical advice. FSRs are here for you to offer a listening ear and a judgment-free space to talk.

HOW CAN I BE MATCHED WITH AN FSR?

Just contact us at FSR@CDKL5.com and let us know if you would like to be connected with an FSR. We would be happy to arrange this for you.

HOW CAN I VOLUNTEER AS AN FSR?

We hold FSR orientations online several times a year. These orientations ensure that all our FSRs understand their role and how to support best families affected by CDKL5 Deficiency.

If you would like to attend an FSR orientation or if you would like to learn more about volunteering as an FSR, please email FSR@CDKL5.com. We would love to hear from you!