We are a united group of parents, each with a child diagnosed with a severe, treatment-resistant form of epilepsy. In a world where you can feel isolated, the power of shared experience and mutual support, knowing you're not alone, makes the difference in those darkest moments.

📢Our AGM this week heard from Alice Salisbury from MedCan Family Foundation about the use of illicit cannabis for managing childhood epilepsy.

We also heard from Sophie Hayes RN on her research into the emerging interest among palliative care nurses to receive medical cannabis support.

Friends drive 7 hours week to visit their son whose seizures are so severe, he needs 24 hour care. Cannabis medicine halts his seizures completely, but NHS will not prescribe it so he’s forced into residential care & prevented from living at home. NICE must reconsider

Today, we present our in-depth study to the APPG for Medical Cannabis under Prescription, which accurately assesses the driving factors for families of epileptic children accessing illicitly sourced cannabis and the scale of the problem. With recommendations for change in collaboration with Epilepsy Action

This is a tragic situation and no family should have to go to such devastating lengths to pay for a medicine that can vastly improve quality of life.

MedCan Family Foundation is doing fantastic work in raising the complex issues around accessing this medication.

Government and policymakers have failed to support industry to bring forth innovative trials in advanced cannabinoid medicines. The resulting reality is that families are left to seek access without clinical oversight.
#epilepsy
#savetheunicorn

There is a large amount of misinformation on the internet and exaggerated claims as to the benefits of cannabis for epilepsy. As with any drug, there are potential risks. If you'd like to learn more, we're a community of over 700 families, supported by expert advisors.

Across Europe, US and Canada access to cannabis under clinical oversight for children continues to be a hurdle. With little interest from industry in pursuing clinical trials, families are left seeking support from unregulated sources. UK has an opportunity to be different 🙏

At MedCan Family Foundation, we want clinical-led prescribing. We want our kids to be safe. We don’t want them to be taking illegal cannabis from the guy down the road. We want doctors to engage with us and work with us.
inews.co.uk/inews-lifestyl…

According to AIMp, community pharmacists are spending two hours every day trying to track down potentially life-saving medications for patients.
Dr Leyla Hannbeck, chief executive of AIMp, described the medicine supply chain as being ‘broken at every level’.

Why oh why is it so hard for our children to be treated equally in our society. Why do parents have to work so hard to be the voice of our kids, come on we need a bit of support! We need to do better in our society at inclusion. #westandwithyou MedCan Family Foundation BBC Breakfast

This year, we'll continue to work with ministers, charities, NHS, NICE and industry to fast track the necessary clinical trials to see population wide NHS access and push for prescribing of unlicensed cannabis medicines in individual cases where there is a clear benefit.

Did you know there are 60 types of seizures? With 80 people in the UK diagnosed with epilepsy every day, this #InternationalEpilepsyDay , Zoe Williams sheds light on the different ways the condition can present itself.

#PurpleDay

It's purple day today, the annual epilepsy awareness day!

So we're resharing our #RarelyHeard podcast series, created in collaboration with Beacon for Rare Diseases, featuring the founders of MedCan Family Foundation, listen here:

samebutdifferentcic.org.uk/podcasts

#raredisease #Epilepsy #nationallottery

#Purpleday2024
Today, thousands of amazing people come together to raise awareness and funds to help make a difference for people living with epilepsy. We continue to highlight how cannabinoid medicines are changing the lives of children.
#epilepsy
#epilepsy day
#epilepsy family

Thank you to Chloe Smith for inviting us to her retirement as MP for Norwich North. An event highlighting the work and achievements of local charities. Great support from those in the room for the work we do, with many having felt the impact of epilepsy.

Run by Families for Families
Medcan Family Foundation is a patient led organisation, set up and run by those with direct, personal experience of devastating neurological conditions. As such, the needs of patients are our priority.

Our Chair Hannah Deacon was on This Morning discussing the life changing benefits of prescription cannabis for her son Alfie. However, raising the topic once again that many families, remain unable to access similar treatments that have helped Alfie. #savetheunicorn

Thank you This Morning for having us to discuss how transformative prescribed cannabis has been for Alfie, and the frustrations felt by so many other families who are unable to access these medications.
Thank you to Ben Shephard too who made Alfies day week !
#Westandwithyou

Tune in today to hear from our Chair how her son Alfie, diagnosed with a rare and severe form of epilepsy has seen years of seizure freedom and improved quality of life since being prescribed cannabis.