OUR FRIENDS ON WEBSITE – FOR UPDATING
Matthew’s Friend’s is proud to work with many different patient organisations and charities either by partnering with them and/or providing Ketogenic Dietary Therapy information and support.
If you would like to request your charity be added, please contact us at enq@matthewsfriends.org
Below is a list of our Friends….
ASTRO BRAIN TUMOUR RESEARCH FUND:
Astro Brain Tumour Fund raises funds to support research into low-grade glioma (LGG) brain tumours. The charity also offers information and support via its website and closed Facebook page, which has over 300 members.
THE CHARLIE
COMPLEX AND RARE EPILEPSIES ALLIANCE (CREA)
About Dravet Syndrome and DSUK
Dravet Syndrome is a rare neurological condition that affects approximately one out of every 19,000 children born in the UK. Dravet Syndrome causes severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems.
Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience. Dravet Syndrome UK (DSUK) was created in 2008 by a small group of parents with a mission to bring hope to families living with Dravet Syndrome through support, education and medical research.
Our dedicated team works closely together to achieve our main aims: supporting our members (more than 500 families), raising awareness and understanding about Dravet Syndrome, funding medical research, and improving the lives of those living with Dravet Syndrome.
Visit our website below for more information.
THE FREYA FOUNDATION
GLUT1 UK
GLUT1 FOUNDATION
HOPE FOR EPILEPSY
HOPE for Paediatric Epilepsy – London, (winner of the ‘Young Epilepsy Champions Award’ 2014 Best Community Support Group), is a charity run by a team of volunteers for children with epilepsy and their families. It was set up in 2012 by Scott Liddle, a parent who identified that there were no support services for children with epilepsy in the area of North London where he lived. He found caring for a child with complex epilepsy an isolating experience, as it is for many families, so he decided to set up a charity to support those in a similar situation.
Over the past 8 years the charity has grown and now supports many more families through free, monthly clubs based in Whetstone. These are open to anyone that can travel to the venue and provide a chance for children with epilepsy and their siblings to play games, do arts and crafts, use the adapted soft-play room and playground and take part in hosted activities (such as entertainers) every month. The parents also have the chance to talk, exchange information and relax in an informal setting with others who are in a similar situation and understand the difficulties of caring for a child with epilepsy. They can even get a manicure if they choose! The charity also provides free days out and a Christmas party.
The HOPE volunteers are available both at the clubs and online to provide support and information. HOPE also invites epilepsy professionals to give talks to the parents and children at the clubs and provides a dedicated information table containing the latest literature on paediatric epilepsy.
Aside from the clubs, HOPE have always provided anti-suffocation pillows to the children that attend. In 2017 HOPE extended this by starting an Anti-Suffocation Pillow Project – funding pillows for any child with nocturnal convulsive seizures living in London.
HOPE relies on fundraising and donations from the general public despite the great need for support for families with children affected by epilepsy. HOPE exists to provide this support.
For more information, visit our website at: http://www.hopeforepilepsy.org.uk/ or our Facebook: @HopePaediatricEpilepsyLondon and Twitter: @HopeEpilepsyhttp://www.dravet.org.uk
INKS (INTERNATIONAL NEUROLOGICAL KETOGENIC SOCIETY)
KETOGENIC DIETITIANS RESEARCH NETWORK
PUBLIC HEALTH COLLABORATION
The Public Health Collaboration is a registered charity (No. 1171887) dedicated to informing and implementing healthy decisions for better public health. Our mission is to improve patient health and help save money for the NHS at the same time by reducing medication through lifestyle interventions.
RING 20 RESEARCH & SUPPORT
Ring 20 Research and Support UK supports families, individuals and professionals who are affected by, or who come into contact with Ring Chromosome 20 Syndrome [r(20)] – an ultra-rare epilepsy syndrome presenting with difficult to treat seizures (often frequent bouts of NCSE), associated with cognitive regression and behaviour problems.
Our primary aim is to support and connect families for mutual support, however, we also have a website where we aim to signpost families and healthcare professionals to the latest information on r(20) and we also raise funds for vital research into this under-reported and under-diagnosed disease.
SUDEP ACTION
SUDEP Action campaigns internationally to raise awareness of epilepsy risks and strives to prevent all epilepsy deaths, including those due to SUDEP (Sudden Unexpected Death in Epilepsy).
There are 21 epilepsy deaths weekly in the UK, where at least 42% are potentially preventable. SUDEP Action provide free services to help keep people with epilepsy safe; including award-winning risk tools, information and resources.
They are the only UK charity dedicated to supporting and working alongside families bereaved by epilepsy – providing free specialist bereavement support services, including counselling and support with inquests.
SUDEP Action also works in collaboration with UK and international research teams to help prevent epilepsy deaths – striving to get the answers that will save lives.
TUBEROUS SCLEROSIS ASSOCIATION
The Tuberous Sclerosis Association (TSA) is the only UK charity dedicated to supporting and representing people living with Tuberous Sclerosis Complex (TSC), a rare genetic condition that affects around 1 million people worldwide.
TSC causes growths to develop in different organs around the body. Common problems from TSC can include epilepsy, autism, learning difficulties and kidney problems. TSC affects each person differently, even within a family.
The TSA is here for everyone in the TSC community, including individuals living with the condition, families and entire communities. We help through:
- Support for the community: We support individuals and families affected by TSC, through our dedicated support team, up-to date information and annual flagship events
- Research: We fund world-class research into the causes, management and treatment of TSC
- Campaigns: We work to influence NHS policy to ensure that people affected by TSC get the care that they deserve
- Support for professionals: We expand the knowledge and expertise of health, social care and education professionals that help people affected with TSC
THE UK INFANTILE SPASMS TRUST
