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 who has been 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 let you know about useful IFCR tools; they are not able to 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 and let us know 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 provide the best support to families affected by CDKL5 Deficiency.

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