What an amazing day, the workshop we delivered today talking about a thrill seeking lovely young adult with CDKL5 was spectacular, we delivered something totally bespoke to her and unique and bought another parental perspective 💚

Thank you for your support.

You scumbag. Hundreds of British soldiers have died over the last two decades supporting your country in your wars. Your utter disrespect, dismissal, and disregard for their sacrifice because it doesn’t suit your present narrative is sickening.

Ditto... 3/4 in our household work and pay taxes. Through a flook of nature she is profoundly learning disabled. She MATTERS, despite not contributing a penny to the economy, she enriches those who know her.

Flowers are blooming and tree buds are budding, which can only mean one thing - today is the first day of Spring 🌿🌻🌷 Night and day are equal in length, 12 hours each, a balance of light and dark ☀️🌕 Spring-time symbolises renewal and growth, and is often associated with new

Today is #PurpleDay2025 an international day to increase awareness of epilepsy and it's effects. Did you know? 💜 65% Million people have epilepsy worldwide 💜 1 in 100 people are estimated to have epilepsy 💜 In 50% of cases, the cause of epilepsy is unknown Epilepsy is a

A huge thanks to Erva, Sam and Jordan FutureNeuro Centre for their time and dedication in mentoring our students RCSI Physiology RCSI on CDKL5 deficiency disorder, alongside their own work. Their guidance has been invaluable to our lab’s progress."

New manuscript... Self-regulating gene therapy ameliorates phenotypes and overcomes gene dosage sensitivity in a mouse model of Rett syndrome science.org/doi/10.1126/sc…

Suffolk doctor says Oliver McGowan training saves lives - BBC News bbc.co.uk/news/articles/…

So beautiful, thoughtful and honest. Thank you for sharing Catriona Moore sending love 💚

Happy Birthday to Princess Charlotte! 🎂🎉

Thank you to all the participants of this conference, and to every essential member of the ePAG. We hope you’re enjoying it, and that we’ll be able to come together again soon 💙

So proud to be a founding member of this new Alliance 💚

NEW PUBLICATION ALER We are excited to share the publication we’ve been eagerly waiting for, a fantastic example of patients as partners in action! This collaborative project, funded by Orion Pharma, brought together patient advocacy groups, medical and research professionals,

World CDKL5 Awareness Day Today, on June 17th, we honour you, the incredible individuals, families, and caregivers who walk the CDKL5 journey with unwavering courage, love, and resilience. Whether you're navigating the heartbreak of early seizures, advocating for your child’s

CDKL5 Awareness Day 2025 💚💚💚 Cure CDKL5 #CDKL5 #LimeGreenForCDKL5

Our research shows that forcing parent carers to battle for support - & subjecting them to unsubstantiated accusations of neglect, abuse, or FII - puts them at risk of suicide & homicide. It's time to fix the system and stop blaming #ParentCarers!! thetimes.com/life-style/par…

Bereaved families demand answers on LeDeR report delay - Learning Disability Today learningdisabilitytoday.co.uk/news/bereaved-…

#OliversCampaign I am angry NHS England Workforce, Training and Education have always been clear: people with a learning disability & autistic individuals delivering Oliver’s Training should be paid Band 5 rates Yet many charities with contracts to deliver it are paying minimum wage Not On My Watch Please retweet