Blog

Perusing Publications

It is so exciting to see new CDKL5 research publications announced. But finding access to scientific journal articles, understanding the studies they describe and interpreting the results can be challenging. Sorting out the studies’ goals, size, and type is enough to make one’s head spin.…

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Research Recruitment FAQ

How do researchers find information about those living with CDKL5 Deficiency Disorder (CDD)? In the early stages of treatment discovery, researchers often utilize natural history studies, patient advocacy organizations, and large research databases from around the world. Research on Humans is conducted only with permission…

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Therapeutic Night-Time Positioning

Kourtni Reed, Aunt, OTD, OTR/L, ATP In this video, Kourtni discusses twenty-four-hour postural management – one of the most important health interventions for those with severe & complex physical disabilities. Twenty-four-hour postural care includes symmetrical positioning over the entire 24-hour period while sitting, standing, and…

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PPE Donning & Doffing

There is a lot of confusion around personal protective equipment (PPE) so we gathered some resources for you. The CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies), especially in areas…

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2020 Conference Update

We are sad to inform you that due to the uncertainties of COVID-19, our 5th International Family Education and Awareness Conference is postponed indefinitely. This decision was tough for the Board to reach. So many of you have told us how much you look forward…

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24 Hours in the COVID-19 Ward with Marie

Welcome our Guest Blogger: Yssa DeWoody, Ph.D., Mother, Cofounder of Ring14 USA, President of Ring14 International   We are taking the COVID-19 pandemic very seriously in our house. This is because, even under the best of circumstances, our youngest daughter, Marie, is medically fragile due…

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COVID-19

IFCR has continued to receive updates from our COE network directors regarding COVID-19. Dr. Tim Benke has shared a few of his COVID concerns with us, and we want to share his recent advice with not only our CDD families but also with the developmental…

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Spotlight: Kristina Cotter, MS, PhD, CGC

In honor of our 10th anniversary, we are presenting this spotlight on Kristina Cotter, MS, PhD, CGC, who is the Research Director at RDMD. Tell us about your research (assume we know nothing). I manage a portfolio of research projects at a company that focuses…

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Second Edition: We Learn

Chatting with Haley and Poppy Second Edition: We Learn Let’s get right to the heart of the matter on this communication thing. Let’s drill down to the basics and focus on what it is like to sit in my wheelchair. I can’t talk; I can’t…

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CDKL5 Spotlight on Grayson

Meet Grayson, our CDKL5 December Spotlight! Mom, Kaylee, shares his story! My husband and I battled unexplained infertility for 3 years. You can imagine the surprise we felt when those two pink lines popped up on the pregnancy test. We were overjoyed that our time…

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