Blog

CDKL5 Mom Walks to Remember

When Melissa Moore’s daughter, Ashley, was diagnosed with CDKL5 in the summer of 2009 at the age of seven, their lives didn’t really change much. The genetic counselor gave her a piece of paper with CDKL5 written on it and told her to Google it…

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Spotlight on Skylar

Meet Skylar! Mom Lauren shares about her sweet daughter! It has been almost a year since we walked into the hospital office to receive the devastating results of our daughter’s genetic testing, CDKL5 Deficiency Disorder. I remember the day vividly. After tons of labs, multiple…

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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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