MedCan Family Foundation

We work on behalf of families with children diagnosed with end of life cancers, severe epilepsy and other neurological conditions where advanced cannabis medicines could be of benefit. Our manifesto sets out our goals for the next 12 months : medcanfoundation.co.uk/message-from-c…

Schools guidance on supporting children with medical conditions is being updated for the first time in 10 years. Your response can help shape how children with epilepsy are kept safe, included and supported in education. It takes around 10 minutes: youngepilepsy.org.uk/get-involved/g…

I’ve urged the Health Secretary to act on the urgent need for access to medical cannabis for children with drug‑resistant epilepsy. Too many families are still forced into financial hardship to secure treatment that should be available on the NHS. @MedcanFamily

At MedCan Family Foundation, we’re here for you — whether that’s through a phone call, our Facebook community, or a reassuring email when you need it most. But our support goes far beyond cannabinoid medicines. We’re parents too. We’re navigating the same endless hospital appointments, assessments, EHCP plans and battles for the right care. We understand the exhaustion, the uncertainty, and the strength it takes to keep fighting for your child because we’ve lived it. MedCan began when Matt and Hannah felt isolated while navigating their own journey through drug-resistant epilepsy. That feeling sparked a mission: to make sure no family ever has to walk this path alone. Today, that mission has grown into a community of families who lift each other up every single day. Some have formed friendships for life. Others find comfort simply knowing there’s someone on the other side of the screen who gets it the fear, the hope, and the unknowns of this diagnosis. Whatever stage you’re at, however heavy things feel, you don’t have to face it alone. We’re here. And so is a whole community who understands.

@SeamusLoganMP Thanks to you, and all the MPs, who took the time to come and hear from us and the families. It was so heartening to have so many MPs engage in the fight against drug resistant epilepsy

I was pleased to meet with families whose children have drug resistant epilepsy at a parliamentary event organised by @MedcanFamily this week to hear more about their calls for action on access to cannabinoid epilepsy medication on the NHS.

The science is clear. The evidence is here to move forward into adaptive trials. Cannabis saves lives, especially for children with severe epilepsy. But in the UK, bureaucracy and fear are costing lives. Every day we wait, children suffer. Families break. It’s time to move from talking to doing. We need change. We need action. Now.

“It’s a blessing every day when your child wakes up.” For families living with drug-resistant epilepsy, every day is uncertain. As a parent, your instinct is to protect your child, but drug-resistant epilepsy is relentless. This is the reality for thousands of families across the UK still waiting for real change. 🎥 Watch the clip. Share their story. Help raise awareness of the urgent need for access to effective treatments. @khloekardashian

In June 2018, with children suffering life-threatening, uncontrollable seizures and having exhausted every available option, Parliament publicly declared the situation unacceptable: "The position we find ourselves in today is not satisfactory... not satisfactory for the parents, it's not satisfactory for the doctors, and it's not satisfactory for me." November 1st, 2018: The law changed, making cannabis-based medicines legally prescribable. Today, seven years later: For the children in the UK, the very ones whose critical need drove the original legal change, the reality is a tragic standstill. Nothing meaningful has changed. _________________________________________ ALL TOLD: This is our new awareness campaign. This is the heartbreaking story of a fight that began with children battling for every breath, every moment, every chance. This is the sound of families pushed to the brink and running out of options. And this is why we will not stop until access truly means NHS access. We urge you to share this story with your member of Parliament and support the change our children deserve. medcanfoundation.co.uk/call-to-action/

If a medicine helped your child when nothing else could — but remained out of reach — what would you do? Would you stay silent, or would you demand action? As a final call we’re asking every parent, every supporter, to contact their MP today and urge them to attend our event this November. 📩 Email your MP here: medcan-foundation.emailyourmp.uk 🎥 Our new awareness film — from which this clip is taken — will be launching very soon. Stay tuned.

@Matedwards7 @Global_Reg_Svcs 🔥🔥🔥 - awesome, congratulations. We know how moments like these feel !

She wears a helmet, has a feed tube in her nose and has multiple absence seizures resulting in drops every day. Yet this week my daughter and her helper ran 100 metres in her sports day without having a single fall which quite frankly is a miracle. #prouddad #hope

Our Goal : Hope for the 30% Breakthrough treatments for drug resistant epilepsy will not come from existing drug development pathways. Those routes have not moved things for our children in 50 years. We need a new approach, but one that does not lower standards of evidence or safety. Cannabinoids represent an entirely new multi-targeted personalised approach to seizure control and improved quality of life. #SaveTheUnicorn

Thank you to @PPLIVE_ for inviting @sarahwollaston and I to record a special live episode at Cannabis Europa this morning. Our guests @ToniaAntoniazzi @MedcanFamily and @diego_quattrone - episode will drop later this week.

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 unacceptable. We're reaching out to you, the public, because your support is the most powerful catalyst for progress. Without a wave of public concern, our Members of Parliament may never truly grasp the depth of this issue, and the families depending on us will continue to struggle in silence. We've organised a critical Parliamentary event to ensure MPs hear these stories and commit to solutions. Your action right now can ensure their attendance. ________________________________________ Honouring a Remarkable Legacy: Hannah Deacon This event is also a profound moment to acknowledge the recent and deeply sad passing of our beloved friend, our co-founder and tireless campaigner, Hannah Deacon. Hannah's son, Alfie, was the first child in the UK to receive a medical cannabis prescription through the NHS – a landmark moment born from Hannah's unwavering love and fierce determination. Her relentless efforts were instrumental in bringing about the 2018 law change that allowed for medical cannabis prescriptions. Yet, her fight wasn't just for her own beloved son; it was for every family facing similar struggles. Her compassion knew no bounds, and she championed the cause of all children living with drug-resistant epilepsy. ________________________________________ Continue the Fight: Your Voice Matters Now, we have a profound opportunity to truly honour Hannah's remarkable legacy. We can move beyond words and take meaningful action that will transform the lives of thousands of children. Let's ensure her tireless advocacy continues to resonate, bringing hope and healing to those who need it most. Please be a voice for thousands of families. Your support now could help deliver the access to treatment that was promised. Click our easy link, and in moments, you can email your MP. Tell them to be there, to listen, and to act for these families. 🔗 medcan-foundation.emailyourmp.uk Be a part of this movement for change. Share this post with everyone you know. Together, we can make our voices impossible to ignore. #ActForFamilies #MPEngagement #CommunityPower

We're deeply saddened by Hannah's death. Her work to improve access to cannabis-based medicines for children with treatment-resistant epilepsy made a lasting impact. Her work continues with @MedcanFamily & we send our heartfelt condolences to her family. bbc.co.uk/news/articles/…

We were saddened to hear about Hannah. She was an inspirational mum to Alfie and made such a difference through her campaigning work and gave so many families a voice and advocate for change. Our thoughts are with Hannah's family at this very sad time. bbc.co.uk/news/articles/…

We are heartbroken to share that @Hannah_Deacon40 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. Hannah was remarkable: determined, tenacious, and fiercely compassionate. Her fight to find treatment for her son Alfie’s rare and severe epilepsy led to a breakthrough that changed his life and ultimately changed the law. She went on to transform the lives of thousands of patients and families, never stopping in her work to push for better access, better care, and a better understanding of medical cannabis. More than anything, Hannah’s most proud and important role was being a mum. Alfie and Annie were her world. She adored them. Everything she fought for came from her enduring love for them and wish to make the world kinder and fairer. Hannah was our brave, beautiful partner, daughter, sister, and friend. She made us laugh, made us think, and made us feel stronger just by being there. All of us are better for knowing her. We only wish we could have had more time. We will share more in the days ahead to honour Hannah’s life, her work, and the legacy she leaves behind.

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 rare they affect fewer than 1 in 50,000. Funding for rare epilepsy is crucial to advance research, develop targeted treatments, and support children and families facing these challenging conditions.

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 highlights the critical need for personalised care. The campaign for NHS access reflects the real-life and clinical promise of cannabinoids, innovative multi-action medicines designed with diverse mechanisms and prescribed in individualised ratios to maximize benefit for each child. #savetheunicorn