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'We know that doctors who want to help children, and want to proscribe in the NHS, are being told they cannot' On #BBCBreakfast Hannah Deacon, whose son Alfie is one of a handful of NHS patients to receive medical cannabis, spoke to Layla Moran MP, chair of the Health Select

Consecutive governments have been complicit, allowing this to happen. Thank you, Layla Moran 🔶🕊️, for highlighting the need for a path to licensing for the second generation of cannabinoid medicines of which have been inaccessible for 7 years. Time has come for change.

Neurologists are asking for licenced medicines, industry wants to provide that, but there's a key sticking point preventing that happening for the advanced multi-compound cannabinoid medicines. It requires a multi-agency approach to resolve beginning with Wes Streeting

“No witnesses from disability organisations”

6 years ago Steph and Dom explored accessing cannabis in the UK to treat their sons severe drug-resistant epilepsy. Today these treatments remain inaccessible. This week a parliamentary debate discusses this very topic, We hope Wes Streeting and his team brings urgent change.

It's developmental delay, learning difficulties, disability, behavioural challenges, unpredictability, anxiety, panic attacks, insomnia, exhaustion, irritability, anger, frustration. It's finding that balance between seizure control and quality of life. #internationalepilepsyday

For or against cannabis cultivar nomenclature in medicine, it has no direct bearing to why patients in particular paediatrics are unable to obtain cannabinoid medicines through the NHS telegraph.co.uk/gift/350d7ffdf…

The fundamentals to why neurologists are uncomfortable prescribing and children remain unable to access advanced cannabinoid medicines through the NHS is the lack of innovation. Rare disease requires a personalised patient centric approach.

Our very own unicorn..... #RareDiseaseDay2025

With your regular contributions, the Epilepsy Research Institute is enabling pioneering lab-based and clinical research that will unlock new treatments for everyone affected by epilepsy. Together, we will radically advance research into epilepsy. donate.epilepsy-institute.org.uk/donate/

We are deeply saddened and shocked by the response from the Health Minister regarding families who have been forced to seek access to cannabis medications through illegal routes to treat their child's uncontrolled seizures. Despite pursuing all legal avenues, these medications

Imagine a world where epilepsy isn't shrouded in stigma, where children with drug-resistant seizures, often battling rare and complex syndromes, receive the support and research they desperately need. This is the world we're striving for at Medcan Family Foundation, and you can

#PurpleDay serves as a profound tribute to the courage and perseverance of those diagnosed and living with #epilepsy. Today, we shine a light on the relentless strength of our own children battling drug-resistant epilepsy. Every hard-won step forward—every cherished

We are a small charity with an enormous challenge, having Khloé retweet and raise awareness is rather big for us ! Thank you !!!

Hannah has touched the lives of so many—now it's our chance to give back and support her. Your help in sharing and raising awareness would mean the world. The smallest of donations can make an significant impact. Please support if you can 🙏 gofund.me/161e8e99

Although specific drug-resistant epilepsy syndromes are uncommon, their collective impact means 1 in 3 children with epilepsy still struggle with uncontrolled seizures. The long-standing failure of the "one-size-fits-all" approach and traditional RCTs to alter this 30% statistic

Getting summer-ready? Medical cannabis can help with sleep, pain & stress relief. We’re one of the first independent dispensaries—partnered with Leyes Lane Pharmacy—offering low costs & delivery options for all your meds. #SummerWellness #MedicalCannabis #DispensaryCare

Although epilepsy is the second most common neurological condition in the UK, many children live with rare, drug-resistant syndromes of epilepsy. Around 30% of people with epilepsy have seizures that do not respond to standard treatments. Among children, some syndromes are so

We are heartbroken to share that Hannah Deacon died on Tuesday 6 May, surrounded by those who loved her, after a short and brutal illness. She was just 45.  This devastating loss to Hannah’s beloved partner Drew, and children Alfie and Annie, is impossible to put into words.

A Call to Action for Our Children Things won't change unless we make them. And for the families we support, change can't wait. Imagine watching your child suffer daily, enduring, relentless and uncontrolled seizures, with all treatment options exhausted. Quite frankly, it's