MedCan Family Foundation @MedcanFamily
Working on behalf of families to access life saving cannabis derived medications. linktr.ee/medcanfoundati… United Kingdom Joined May 2020-
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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 @alicesalisburyj from @MedcanFamily about the use of illicit cannabis for managing childhood epilepsy. We also heard from @SophieHayesRN1 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. @NICEComms must reconsider
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. @NICEComms must reconsider
Today, we present our in-depth study to the @APPG_MedCan, 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 @epilepsyaction
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. @MedcanFamily is doing fantastic work in raising the complex issues around accessing this medication.
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. @MedcanFamily 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.
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 🙏
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 @MedcanFamily, 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’.
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 @MedcanFamily @BBCBreakfast
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, @DrZoeWilliams 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 @RareBeacon, featuring the founders of @MedcanFamily, 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 #epilepsyday #epilepsyfamily
Thank you to @NorwichChloe 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_Deacon40 was on @thismorning 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 @thismorning 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 @benshephard 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.
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.
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17K Followers 6K Following #WestDunbartonshire MP @SNPDefence Spokesperson | #Independence 👬 🐕 🐕 | Constituents email [email protected] Gräv där du står📢Our AGM this week heard from @alicesalisburyj from @MedcanFamily about the use of illicit cannabis for managing childhood epilepsy. We also heard from @SophieHayesRN1 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. @NICEComms must reconsider
Today, we present our in-depth study to the @APPG_MedCan, 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 @epilepsyaction
@FoxwellFilms @APPG_MedCan @MedcanFamily @wesstreeting The great thing about the @APPG_MedCan sessions is representation from all parties, and you’d be amazed how willing MPs are to collaborate on tough issues like this. It was heartening to hear from @ToniaAntoniazzi that it is on the leadership radar, but we need to keep pushing
Quite the view on the commute to Parliament today to discuss growing concern around families using illegal cannabis products to treat childhood #epilepsy Huge thanks to the @APPG_MedCan for hosting us
Our discussion groups with youth from across Canada highlight the importance of engaging #youth in #clinicaltrial design. Together, we're ensuring trials are inclusive, impactful, and truly reflective of youth needs. 🧠💡 #youthengagement #youthperspective
If you would like to know more please visit their website: medcanfoundation.co.uk or have a read of our information pages: epilepsy.org.uk/info/treatment…
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. @MedcanFamily is doing fantastic work in raising the complex issues around accessing this medication.
'I’ve sold my house to pay for my daughter’s medical cannabis': ITV News Reporter @samholdertv speaks to a family struggling to afford private prescriptions of the drug being used to treat epileptic seizures itv.com/news/2024-04-2…
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 #westandwithyou #savetheunicorn
I spoke to @samholdertv on @itvnews tonight about the reasons why #medicalcannabis is not widely available on the #NHS. TV clip shows obstacles and 👇some solutions: 👉innovative IP 👉RWE to accelerate drug approval 👉novel NICE analytical frameworks itv.com/news/2024-04-2…
🔈In case you missed it - Dr. Bonni Goldstein gave a great talk at our March C4T Meeting titled “Use of Pharmacometabolomics to Measure the Impact of Cannabis Treatment for Autism.” 🌱 You can watch the full recording at: youtu.be/n0GeN5q2y-c?si…
We're pleased to be hosting presentations from @MedcanFamily and @Drug_Science at our event on Monday 22 April in London. CIC also works with other patient and campaign groups, such as @PatientsCannUK and @seedourfuture_, on publications and other outputs. 1/2
@IACMPatients @MaespCanabis The irony of it all... Mother's and famies putting THEIR ALL into legalizing the plant so it can be shipped elsewhere, possibly not even for medical use. The reality of regulation is something only #wethepatients can tell you all about...
How can Portugal have legal access to #medicalcannabis, be the 2nd biggest producer of cannabis in the EU, and mothers of kids with epilepsy still have to go to the illicit market for the CBD-rich products that control their seizures? @MaespCanabis buff.ly/49Z0w8F
At @MedcanFamily, 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…
The Nuffield Trust report published today shows we are right to be concerned about the state of medicine supply chains. For people dependent on #epilepsy medicines to control #seizures, we cannot allow shortages to be the new normal. nuffieldtrust.org.uk/news-item/pati…
Two more days! After a seizure she is back with the yoga. She’s loving training for her walk for LGS research. Thank you for cheering her on and for donating. 💚💜🙏 Savannah’s Walk ‘n’ Wheel for LGS Research @LGS_Foundation lgsfoundation.salsalabs.org/2024walkforlgs… #LennoxGastautSyndrome
LGS is tough. So is this kid! Seizures won’t stop her. Go Savannah! #LennoxGastautSyndrome #Epilepsy #Autism #IntellectualDisability #Walk4LGS #LGSStrong #Viral
Two more days! After a seizure she is back with the yoga. She’s loving training for her walk for LGS research. Thank you for cheering her on and for donating. 💚💜🙏 Savannah’s Walk ‘n’ Wheel for LGS Research @LGS_Foundation lgsfoundation.salsalabs.org/2024walkforlgs… #LennoxGastautSyndrome
We welcome barrister Tom and discuss his efforts to make law more accessible through @CrossExaminePod, his journey to becoming a barrister and how thepublic law and human rights intersect with his work in #medicalcannabis. Supported by @Curaleaf_Labs 🎙️mapletreeconsultants.co.uk/podcast
My approach to my daughter's insomnia includes: ✔️ Never making her anxious about it. I reassure her that it's totally okay to just listen to her body, reminding her that I am always with her, right next to her. ✔️ Arranging her nutrition plan around her sleep cycle. I feed her…
Beautiful Flo has sadly passed away after a valiant 13 month fight with #DIPG Sadly this is not yet a battle that can be won, her family wanted us to thank all that sent so many lovely pictures, cards & presents 💗 Sleep well beautiful girl. #ResearchMatters
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