Episode 14: Carol-Anne’s Life with Amber (age 20)
CDKL5 in Color · Episode
✨🎙️ New podcast episode is out and we are SO excited to have Carol-Anne from CDKL5 UK in the studio talking about life with her soon-to-be twenty-year-old daughter, Amber!
open.spotify.com/episode/5tpG...
20.04.2025 17:46 — 👍 6 🔁 2 💬 0 📌 0
Back in Rome for the 5th “In Search of Lost Time” workshop which this year is focusing on focal cortical dysplasia’s and auto-immune disease with epilepsy, view from the hotel entrance #rareepilepsy #cdkl5 #epag
16.12.2024 07:20 — 👍 0 🔁 0 💬 0 📌 0
That is so true! In our house too or mini sausages!
15.11.2024 06:31 — 👍 0 🔁 0 💬 0 📌 0
Feeling amused the cat posts are fewer but corgi posts have picked up! Not a mad cat lady or a mad corgi lady! #deerhounds
14.11.2024 15:32 — 👍 0 🔁 0 💬 0 📌 0
Snow already? We were there a couple of weeks again in our motorhome gutted to have missed this beautiful weather. Lush photo as we say down south!
13.11.2024 19:39 — 👍 1 🔁 0 💬 0 📌 0
Pikehouse Originals specializes in fabric creations for babies and special needs. Bibs, burp cloths, waterproof bed and chair mats, sensory quilts, ribbon quilts, slippers, g-tube pads and many other items. A portion of the proceeds supports CDKL5 research
Unpaid Carer; Writer; Quaker Socialist; Disability activist; #CleanAir & Peace Activist; #CDKL5 UK Trustee 💚🧬; #Havering arts/theatre reviewer; Clear the Air in Havering + CND Essex co-founder; Furnisher of Fairy Lights. Join @greensorganise.bsky.social
Neuroscientist, BRAIN enthusiast, photographer, husband, dad. All views are my own.
Epilepsy surgery mom, patient & family advocate, dog person. Former teacher and journalist. I support access to healthcare, equal rights, and a safe, clean environment. I love my family most of all. 🐶🏂🚴♂️🎭 (posts are my opinion only)
Bermudian marine scientist, artist, father of 3 great kids including one with CDKL5 deficiency disorder.
PhD student exploring astrocytes GliaLab, University of Oslo | Neurology resident Sykehuset Østfold | Podcaster - Sharp Waves @ilae-epilepsy.bsky.social
Fascinated by all things epilepsy, stroke, sleep, and glial cells.
Operations Director. Previously TIME, VICE News and the Village Voice. Posting about media, technology and the future of work. Learn more: https://tylerborchers.com/
Developing methods & assembling data to explore multi-omic dynamics across cell contexts, in stem cell models & neocortical development, neurodegeneration and neuroinflammation in particular: http://carlocolantuoni.org
Spreading positive vibes in the world
Senior Scientist, Department of Biology, Emory University, Atlanta, GA.
Molecular Biologist. RNA Scientist. Yeast Geneticist 🧬. British🇬🇧. Runner 🏃🏻…. Opinions are my own.
Interests: RNA Decay, RNA Processing, RNA & Disease.
Developmental/stem cell biologist, group leader at Stockholm University. I study embryonic tissue patterning and shaping.
Also, music and abstract strategy games!
Lab Manager for the Mefford Lab | St Jude Research Hospital | 🇲🇽 | 🐻 |
#iPSC scientist & #organoids engineer for #RareDisease working on disease modeling & precision medicine. @StJudeResearch, @ubc alumnus🇨🇦
Director, Seaver Autism Center for Research and Treatment, Icahn School of Medicine at Mount Sinai. Shakuhachi student.
Covering all news on wars, politics, climate change, science, travelling, photography and more.
🌌 🌋 🌊 🦠 📚 🔫📸🧳
Founder of Hope for ULD, wife, mom, grandmother, teacher, animal lover, follower of Jesus, finding great value in truth, integrity and compassion, fighting #RareEpilepsy
Interessiert an Natur,Art,Sience und Politik.Lügner,Korruption und Kriminelle sind mir zuwider.
Fan vom lebenslangen Lernen,Frieden und Mutter Erde.
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Ein freier Geist ist eine alte Seele,
es gibt nichts mehr zu beweisen.
