About Us
Intractable is the first UK epilepsy charity helping children and young adults with privately prescribed medicinal cannabis costs.
Our Trustees
Graham Levy - Chair
Graham's daughter Fallon has had Lennox–Gastaut Syndrome since age 4. She is now 28.
LGS is characterised by many and varied different types of seizure, as well as some amount of mental or behavioural challenges. Over 200 seizures a month was typical, use of a wheelchair when out, and in short a poor quality of life.
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Fallon started taking Medicinal Cannabis in June 2018 which was accessed from Holland, until it was legalised in November of that year. Her seizures have reduced by 90% and some days she is seizure free. Medical cannabis is not a cure for intractable epilepsy…. but it has given Fallon her life back.
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This charity has been setup to help families with the financial burden, until such a time it will be available on the NHS. Graham urges people to stay strong until that day, and support the trustees in their quest to help the families with their financial burden of this medication.
Joanne Griffiths - Vice Chair
Joanne's son Ben has intractable epilepsy. Over the past twelve years he has tried various combined epilepsy medications, surgery evaluation, and the ketogenic diet, all were unsuccessful. In 2014 the family learned about medicinal cannabis oil, but their son did not meet the criteria for the NHS trials. They asked several times from 2016 to the present day, unfortunately NHS access was blocked so they had to self-fund this treatment. Joanne has been campaigning since early 2018 for NHS access to these legal medications and joined the campaign group “End Our Pain” in early 2019, later becoming a parent spokesperson.
Her son has had a private prescription since April 2019 for a full extract medicinal cannabis oil, which has transformed his life. However, Joanne and her husband Paul were unable to enjoy these moments of joy with their son as they had to constantly fundraise to give him that quality of life.
Therefore, the charity INTRACTABLE, has been established to help families, by raising funds and educating people with Intractable Epilepsy to other options that may help.
Karen Gray - Secretary
Karen’s son, Murray has Doose Syndrome (a form of intractable epilepsy). He was suffering many seizures daily and tried various NHS prescribed anti epileptic drugs. Nothing helped.
In 2018 Karen started a petition to access medicinal cannabis through the NHS. Over 200,000 signatures were added to the petition when she hand delivered it to Downing Street. The law did change in November 2018 to allow clinicians to prescribe cannabis, however no clinicians are willing to do so.
In 2019 Karen decided to travel to Holland to seek a doctor to write a prescription for the Dutch cannabis oils Bedrolite and Bedica, as Murray had been hospitalised with seizures for 3 months. She filmed a documentary with the BBC at the time called “Can cannabis save my child”.
Over the course of a very stressful 3 months (illegally bringing cannabis oil into the U.K., Murray started to get better. Fast forward to today, Murray still takes the Dutch oils and has been seizure free since June 2019.
Cannabis oils are now available privately which cost a lot of money. Many parents fundraise to be able to pay the vast cost each month. Karen said -This is why I am delighted to be involved with “Intractable”. I want to be able to help fund the costs of these life saving medicinal cannabis oils.
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Ronnie Cowan MP – Trustee
Ronnie Cowan is the member of the U.K. parliament for Inverclyde. He was first elected in 2015 and re-elected in 2017 and 2019. Along with many aspects of social reform, he has campaigned for a major overhaul of the U.K. drugs policy. As part of this he has campaigned for the creation of a U.K. based industry to produce medical cannabis which could be provided free on the NHS. Recognising the interminable time it has taken for the U.K. Government to react he is now supporting the shorter term requirement of raising the money that will allow parents and guardians to pay for the medicinal cannabis required to treat the children in their care.
Honorary General Counsel
Michele Price
Michele Price is a specialist Charity & Philanthropy solicitor at the City firm, Gunnercooke LLP, with a passion for helping small charities achieve their ambitions. Having experienced the death of a close family member from complications arising from epilepsy, she has been advising the founders since 2020 and in June 2022 successfully registered the organisation as a charity with the Charity Commission. She continues to provide support to the Trustees on issues of governance, compliance and fundraising as Honorary General Counsel to the Board on a pro bono basis.
Our Advocates.
Professor David Nutt
David Nutt is a psychiatrist and the Edmond J. Safra Professor of Neuropsychopharmacology in Imperial College London. He is currently Founding Chair of the charity DrugScience.org.uk and has been president of the European Brain Council, the BAP, BNA, and ECNP. David has published 35 books and over 1000 research papers that define his many landmark contributions to psychopharmacology including GABA and noradrenaline receptor function in anxiety disorders, serotonin function in depression, endorphin and dopamine function in addiction and the neuroscience and clinical utility of psychedelics. Some of this has been made into films e.g. https://www.imdb.com/title/tt8661404 on Netflix and https://www.bbc.co.uk/programmes/m000w7bq on the BBC and a play https://www.goodreads.com/book/show/43887749-all-you-need-is-lsd . He broadcasts widely to the general public on pharmacology and psychiatric matters, has over 60k followers on twitter and has his own very popular podcast (https://podcasts.apple.com/gb/podcast/the-drug-science-podcast/id1474603382).
David’s publications are on https://www.imperial.ac.uk/people/d.nutt/publications.html
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Dr Anne Katrin Schlag
Dr Anne Katrin Schlag is a Chartered Psychologist and Head of Research at Drug Science. She completed her PhD in Psychology at the London School of Economics and Political Science, before working as Lecturer at King’s College London where she developed her expertise across the spectrum of science and policy making, risk perception, risk management and risk communication. She holds Honorary Senior Fellowships at both Imperial College London and King’s College London, and currently is Chair of the Cannabis Industry Council Research Group. Dr Schlag has a keen interest in the social, ethical and moral dimensions of national and international drug policies, and related regulatory and policy-making challenges.
Within her role at Drug Science, Dr Schlag leads the research for the Medical Cannabis Working Group (MCWG), and the Medical Psychedelics Working Group. The MCWG is focused on advancing the scientific evidence base on medical cannabis, including Real World Data, and on the continued development of education and stakeholder communication about medical cannabis. Dr Schlag is passionate about improving and accelerating access to medical cannabis for the people who need it the most.
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aboutus
INTRACTABLE has been set up by families who have children who suffered with severe intractable epilepsy.
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We each have a loved one who are benefiting from medicinal cannabis.
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We have all had to fundraise to maintain the costs associated with our loved ones privately prescribed cannabis medication.
We all want to help other children in a similar position to our own
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The families have been joined by others who are sympathetic to those that suffer with intractable epilepsy and families continued financial struggles to pay huge prescription costs.
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TOGETHER WE HAVE TAKEN THE FIRST STEPS TO HELP OTHER FAMILIES!