Blog

Caregivers of Children

One thing that we at the International Foundation of CDKL5 Research are the proudest of is the fact that parents and caregivers of CDKL5 children created the organization. We understand that each child, situation, and family is different; but we have a great sense of…

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November is National Epilepsy Awareness Month

November is National Epilepsy awareness month, and many CDKL5 families have strong relationships with epilepsy. Many received inaccurate diagnoses of epilepsy before the correct one of a CDKL5 disorder. The more people that can recognize epilepsy, the more will be able to recognize CDKL5— we’re…

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Disability Discrimination

Having a child with special abilities brings unique joys and struggles; especially when the said child doesn’t speak and is wheelchair bound which is the case for a lot of our CDKL5 families. We want you to have as many resources as possible. If your…

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Recent CDKL5 diagnosis? – We are here to help!

In an informal poll taken on our Facebook page, some of our IFCR parents spoke up about their first questions upon receiving the CDKL5 diagnosis and any words of comfort, advice, or wisdom that they found helpful. Here is what they answered in order of…

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