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Medical Nutrition

   


For parents to look at the products SHS do for the Ketogenic diet and what the company is all about.

   

Epilepsy Charities


The Muir Maxwell Trust aims to make a difference by providing children and their carers with practical support and by speeding up what can be a frustratingly slow diagnostic process.

The Intractable Childhood Epilepsy Alliance (ICE) seeks to fill the gap of information, education, and translational science in order to improve lives of children affected by intractable epilepsy and to expedite advancement towards a cure through strategic, measureable processes. We are dedicated to improving the outcome for all treatment resistant epilepsies in childhood.

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The National Society for Epilepsy is committed to providing information and support to people with epilepsy. We also provide care for people with epilepsy through medical and residential services.

Epilepsy Action is a charity providing information, advice and support for people with epilepsy.

It provides freephone and email helplines and a wide range of information booklets. It has around 100 local support groups across England, Wales and Northern Ireland and a network of volunteers working in the community.

A charity dedicated to epilepsy research. Our aim is to substantially increase the funding available for research into the treatment and prevention of this debilitating condition








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The National Centre for Young People with Epilepsy (NCYPE) is the UK’s major provider of specialist services for children and young people with complex epilepsy.

A national charity, The NCYPE works in partnership with Great Ormond Street Hospital for Children NHS Trust and the Institute of Child Health. Located in Lingfield, Surrey, The NCYPE'S 200-acre campus includes St Piers School, St Piers Further Education College and a range of epilepsy diagnostic, assessment and rehabilitation services.

They also run an enquiry line:
01342 831342 (national rate call)
Monday to Friday 9am-1pm

 



Epilepsy.com is an online resource provided by the Epilepsy Therapy Development Project. Their mission is to inform and empower two groups of patients and their families: those facing newly diagnosed epilepsy, and those struggling with epilepsy that has resisted treatment. They also have a ketogenic diet page, with up to date news and information.



Epilepsy Awareness is a specialist epilepsy training consultancy. They provide a range of training courses to meet the needs of staff who care and support individuals with epilepsy



Hospitals / Epilepsy Centres

 


AT THE MOMENT – Great Ormond Street is the centre of excellence for the diet in this country.



This one is obviously a must – almost in the same breath you hear ‘Ketogenic diet’ the name ‘Johns Hopkins’ will be following closely behind.

 


Ketogenic Diet

 


The Charlie Foundation was established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy. The Foundation's role is to facilitate investigation, educate professionals, and inform families about the current status of the ketogenic diet.


www.coconutketones.com
What If There Was a Cure for Alzheimer's Disease... and No One Knew?
 

Parent / Support Groups



These are parents from around the world and a wealth of knowledge can be found on there. Although bear in mind that it is mainly a US group – so things can be different. If UK parents use this site and are unsure of anything they should check it out with their own keto-team or with Matthew’s Friends.


Anita's greatest desire was to educate the public about epilepsy and help eliminate the fear and stigma associated with epilepsy. The Foundation was established in 2004 at the direction of Anita, after she passed away.


CWE aims to provide a forum for people living with epilepsy (both people with epilepsy and those who live with or care for people with epilepsy) to discuss epilepsy, seizures, medications, treatments and all aspects of living with and coping with the disorder.











This is an organisation for parents who want to work and have disabled children. Go to their website and sign up for the newsletter ‘Waving Not Drowning’ which you can receive free if you have a disabled child. Very informative and well worth a visit.


Parents for the Early Intervention of Autism in Children. If you are interested in finding out more about ABA (Applied Behavioural Analysis), often referred to as the Lovaas programme, then I would strongly recommend visiting this site.


The Child Care Action Trust is a national registered charity that exists for the relief of disabled children, living in the United Kingdom, by the provision of equipment and facilities for such children that are not freely available from the Health or Social Services and that are not affordable by the disabled childs parents or guardian.











We want to give epilepsy patients, carers and their families the opportunity to collate information and receive advice on all issues relating to Epilepsy. By doing this we want to distribute leaflets, information and booklets and display posters from all organisations associated to Epilepsy, including Mathews Friends.


Highly recommended for all of us who are looking after a disabled child. You can access the latest information and news in relation to carers rights and there is also details of what is available in your area to support you and your family. Well worth becoming a member.


Special Kids in the UK is a charity for families who have a child of any age with special needs. All families of children with special needs deal with similar concerns with support, education, respite and therapies. Special Kids in the UK aim to provide that vital support when it is first needed and throughout your child's life. Excellent Forum too!











Epilepsy Bereaved support families who have experienced a sudden death from epilepsy; funds research into sudden death in individuals with epilepsy; and supports the bereaved to influence decision makers and educate the local community.


The Henry Spink Foundation is an independent charity created to help families of children with severe disabilities of all kinds. They provide information on conventional and complementary / alternative medicine, therapies and research relating to a very wide range of physical and mental disorders.


A site developed by parents to provide information on Doose Syndrome - Myoclonic Astatic Epilepsy


Independence Homes provides accommodation and support for adults living with epilepsy, other medical needs and learning disability. We're currently working with adults in both supported living programmes, and in a number of community based residential homes across the South East.


The American Epilepsy Outreach Foundation is a non-profit organization established in honor of Emmett Leyden, a three-year-old boy, who is living with Epilepsy. The Foundation’s mission is to raise the public’s awareness of Epilepsy through advocacy and education, as well as provide support for children with Epilepsy and their families. We will strive to eliminate the stigma and dispel the myths surrounding Epilepsy.

CURE Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease

This is a website about young people’s real life experiences of health and lifestyle. This is not just a website about the medical facts, this is about real people and real lives


The directory for the disabled and elderly.
 

 

Information on Medicines




 


This site is very useful if you want to find out about the medicines you are giving your children and what's in them, side effects and interactions with other drugs etc. Although the site is for UK medicines they do provide links onto other similar sites all over the world - so ALL our friends around the globe can benefit from paying this site a visit. Well worth a visit.



The BNF provides UK healthcare professionals with authoritative and practical information on the selection and clinical use of medicines in a clear, concise and accessible manner. The BNFC provides similar information for children. Both sites require registration.



Scales Suppliers

DIGITAL
SCALES
COMPANY

 

FOLLOW THIS LINK for a 10% donation to MFs for any orders from Scales Express.

Use Code MF001 to get a 10% discount from the Digital Scales Company.

Use code EMF001 at www.e-scales.co.uk to receive a 10% discount on this site.

Food Suppliers



G & G Vitamins, suppliers of vitamins, minerals, oils etc to members of Matthew's Friends, using code 'MF01', giving 15% discount off online ordering. Will ship national/international.



Get all your DaVinci syrups from here and if you quote LCMAG10 in the discount box you will get the Matthews Friends 10% discount.



Suppliers of organic coconut oil and coconut flour. Also have nutritional information on the use of their products within the ketogenic diet here. Discounts available to MFs members if you sign up for a regular delivery.


Government Information


 


These are the government guidelines that are available in relation to the treatment of many different conditions/illnesses. The latest guidelines on the treatment of Epilepsy is also available for you to read



The government's information website, including information on Disability Living Allowance, Education etc.

 

Recommended Accommodation

   


Pendell Barn

This keto-friendly, wheelchair accessible luxury bed and breakfast is ideally situated close to MF HQ in Oxted , NCYPE in Lingfield and main-line trains to London and Gatwick.

 

Supporters

Monkey.co.uk Car Insurance


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YOU MUST consult your own medical Keto Team before making ANY changes to your childs treatment,
Matthews Friends cannot be held responsible if you do not heed this warning.
Registered charity No.1108016 © Matthews Friends 2004-2013