Blog

CDKL5 Spotlight on Toryn

MEET TORYN! MOM, MYLIE, SHARES ABOUT HER SWEET DAUGHTER. Our journey with CDKL5 Deficiency Disorder began April 7th, a day forever burned into our memory. At 8 months of age, Toryn’s seizures began. They came on fast and furious, starting from “What was that?” To…

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Curing the Epilepsies Call to Action

Urgent Call for Patient, Clinician & Researcher Inputs to Curing the Epilepsies  Twenty years ago (March 2000), the White House initiated a conference called Curing Epilepsy: Focus on the Future to develop research goals (benchmarks) to cure epilepsy. Since then, epilepsy thought leaders have come together…

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CDKL5 Spotlight on Olivia

Meet Olivia! She will soon turn One! Mom, Nicole, shares about her sweet daughter. On the morning of November 26, 2019, when Olivia was just 8 weeks old, I was resting on my bed watching her sleep. She had been restless the prior night so…

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CDKL5 Spotlight on Rian

Meet Rian! Rian is 2 years old this month! Mom, Danielle, shares about her sweet daughter. What are some things you do at home to help your child? Rian loves music so we often sing to her. When she was an infant we played jazz…

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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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