Matthew's Friends are concerned with children and babies who have uncontrolled epilepsy and more recently for adults too. The charity raise funds to provide research and to facilitate training and support for medical professionals working with dietary treatments for refractory epilepsy. They also provide support and up-to-date information for parents/carers of children with epilepsy. Matthew's Friends work with their distinguished medical board and with centres such as Great Ormond Street Hospital and Birmingham Children's Hospital.
It is estimated that epilepsy affects about 600,000 people in the UK and the vast majority of epilepsy starts in childhood. One third of those children will not be helped by anti-epileptic medication and will struggle with increasing disability, learning difficulties and behavioural problems. Those children can grow up to be extremely vulnerable adults and dependant on care for the rest of their lives.
Ketogenic Dietary Therapies:
Ketogenic Dietary Therapies are high fat, low carbohydrate, adequate protein diets that has been proven to significantly reduce seizures in many of these children. It had been popular in the 1920s, but had fallen out of favour as new anti-epileptic drugs were developed and doctors became reluctant to prescribe the diet even for children with severe drug resistant epilepsy – this is now changing.
Matthew’s Friends – The Background:
Matthew Williams (17) has had very severe epilepsy since he was 9 months old. Emma, his mother, asked if Matthew could try the Ketogenic Diet when he was 2 years old, but she was told the diet didn’t work. So she battled on, trying innumerable medications which didn’t help Matthews’seizures and which caused devastating side effects. Six years later, Professor Helen Cross began a research trial of the Ketogenic Diet at Great Ormond Street Hospital (GOSH). Matthew and 144 other children with severe epilepsy were enrolled on the trial. Within 2 weeks of starting the diet Matthew’s seizures had reduced by 90% and within 8 months he was off all medication. Sadly for Matthew, the damage had been done. Years of seizures had caused terrible brain damage, his family had broken apart and Emma was now a single mum to Matthew and his younger sister Alice. Inspired by Matthew, she set up Matthew’s Friends in 2004 to provide information, education, resources and support for other families. The charity, which was started at Emma’s kitchen table, grew at a phenomenal rate. Emma is not only the Founder/Chief Executive of Matthew’s Friends but she also works as the Parent Representative for KetoPAG (Ketogenic Professional Advisory Group for the UK and Ireland) and acts as an International Patron for Desi (Diets for Epilepsy in India). More recently she has taken on the role of Chair of the Health Group for the Joint Epilepsy Council for the UK and sits on the Executive Committee for this group and she is also a Trustee for Dravet Syndrome UK representing all those for whom the medication doesn’t work.
Matthew’s Friends Today:
Matthew’s Friends has a distinguished medical board, chaired by Professor Helen Cross. It has raised over £70,000 for GOSH’s research into the Ketogenic Diet, as well as providing funding for Birmingham Children’s Hospital and other numerous centres around the UK. Matthew’s Friends has been set up in South Africa and is involved with over 20 other countries worldwide in supporting the use of Dietary Treatments for Epilepsy. The charity has now expanded its remit to help adults that are failing medication with the use of the Modified Atkins Diet and Low Glycemic Index Treatment and works with the leading experts in this field. The contribution that Matthew’s Friends makes towards making these diets more widely available and ensuring it is properly supported is internationally recognised by both parents and medical professionals. 2011 saw the registration of Matthew’s Friends New Zealand as the organisation expands to include this region.
The Charity Provides:
An International network which includes USA, Canada, Australia, New Zealand, South Africa, Holland, Denmark, India, Hong Kong and Malta
A comprehensive website which hosts a busy parental support forum and medical forum as well as providing latest research and information on dietary therapies.
A helpline which is available to families 365 days a year.
National and International workshops and conferences for both patients and professionals
A Professional Advisory and Training Service
Educational literature, Ketogenic Diet starter packs and an introductory DVD, supplied free of charge to all UK Ketogenic Centres and Patients.
The first Matthew’s Friends Clinics for Ketogenic Dietary Therapies opened in Lingfield, Surrey based at the award winning Neville Childhood Epilepsy Centre for the treatment of both children and adults either through the NHS or privately funded.
Established: October 2004
Registered Charity Number: 1108016
Phone number: 01342 836571
Address: Matthew's Friends @ Young Epilepsy St Piers Lane Lingfield Surrey RH7 6PWView charity accounts on the Charity Commission website