Blog

How to Cope as a Parent of a Child with Special Needs

You Are Not Alone It takes a while to learn how to cope as a parent of a child with special needs. We have been there and are happy to share what we’ve learned along our journeys. Here are 10 tips we find help us…

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IFCR Research Goals for 2019

Severity Scales and Outcome Measures Our CDKL5 Centers of Excellence continue to lead the way in CDKL5 care and treatment. One obstacle to developing treatments is a lack of clearly defined measures that would allow comparison of CDKL5 symptoms and severity. For instance, cancer tumors…

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Laughing is a Specialty

Guest Blogger – Kim Nothdurft Want to share your CDKL5 family stories? Talk to us about writing a guest post! Last week I sat with our 16 year old daughter, Lily, at one of her many specialists appointments. This time it was her Gastroenterologist, ie…

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2019 Family Hopes and Dreams

We asked our Facebook community what hopes and dreams they have for their family in 2019. Here is what they shared:   Randi: live her best quality of life possible! Dawn: In the new year I hope my loved one with CDKL5 has the best of health…

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A Look Back at 2018 IFCR Research

When IFCR was founded, one of our primary goals was to inspire more research into CDKL5 Deficiency Disorder. As we look back on 2018, we want to share with you the amazing scientific work  your support of IFCR makes possible. CDKL5 Centers of Excellence IFCR…

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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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