Michele Price, Charity and Philanthropy Partner at gunnercooke has successfully registered the first private charity set up to meet private prescription costs of medicinal cannabis for children with epilepsy.
Intractable Epilepsy has been established by a group of parents and guardians and will raise funds to cover the costs of prescriptions that can amount to a staggering £24,000 a year.
Medicinal cannabis has been shown to provide relief from the severity or frequency of seizures. It is prescribed in accordance with NHS guidelines by a specialist clinician on the GMC register, where no other treatment options are suitable.
Over 180,000 people in the UK suffer from Intractable Epilepsy. Using medicinal cannabis to reduce the number of seizures lessens the chances of seizure-related deaths and SUDEP (Sudden Unexpected Death in Epilepsy).
Since the law was changed in 2018 to allow medical cannabis to be privately prescribed, hundreds of people now have a better quality of life, and the charity will increase the number of families that can access this life changing treatment.
Michele Price, Charity and Philanthropy Partner at gunnercooke, specialises in helping charities, and all forms of not for profit, succeed by sharing her unique mix of legal, strategic and practical advice to make good happen. She has worked in house with a national charity, run a charity at executive level and is a trustee or board adviser to a number of Third Sector organisations. She is currently an adviser to a number of high-profile campaigns, such as child food poverty, homelessness, women’s health and relief for Ukraine.
On the philanthropy side, she helps high-net-worths, entrepreneurs, individuals, families and corporations to become social investors.and bring about change.
Michele commented: “This was a sensitive application and beyond the scope of anything I have done previously in terms of meeting the technical questions and requirements of the Charity Commission.
“gunnercooke worked alongside the Charity Commission’s senior caseworker to get this right, and it was important that we did because the difference that this charity will make to the lives of children with this condition is immeasurable.
“My sense of pride comes from knowing that I have played my small part in making that difference.”
“My sincere admiration is reserved for the trustees and their families who have lived with Intractable Epilepsy firsthand, and yet have found the time and energy to ease the plight of others by founding this charity.”
Jyn Schultze-Melling, Data Privacy & Information Law Partner, and Holger Schlueter Partner from gunnercooke’s Berlin office, also supported the charity’s registration, playing an integral role in the complex GDPR aspects.
Michele added: “At gunnercooke we have a network of experienced senior partners across the UK and Europe at our finger tips.
“This strength in depth and ability to refer matters to experienced lawyers with the relevant specialisms has enabled us to deliver the registration of this innovative charity.”
Jo Griffiths, Vice-Chair at Intractable Epilepsy, said: “It has taken over a year of hard work to reach this point. Families like ours are struggling to pay up to £2,000 a month to access this medicine. Now, at last, we will be able to raise funds to help many more cover those costs.
“We are delighted that the Charity Commission has registered ‘Intractable’ and thank them and gunnercooke for their support with the technicalities of this ground-breaking registration.”
Graham Levy, Chair at Intractable Epilepsy, added: “As long as the patient has a prescription written in accordance with the law and the relevant NICE and GMC guidance we will be able to help them, subject to having charity funds.
“As a recognised charity, donors, sponsors and funders can have confidence in our charitable aims.
“We hope that this will be a springboard for our fundraising activities so that we can help as many children as possible.”
For further information and support when registering a charity or any wider charity governance and operational issues, please contact Michele Price