Comprehensive help and information from NHS Choices with links to external websites.
The Jennifer Trust for Spinal Muscular Atrophy
Tel: (0)1789 267 520 jtsma.org.uk
We offer free confidential information, emotional support, practical advice and guidance to anyone affected by Spinal Muscular Atrophy who is living in the UK. Our Outreach Workers can visit you if you are newly diagnosed. Our Peer Support Volunteers can share their personal experience and understanding of SMA with you.
We are SMA research specialists and pride ourselves on our record of funding innovative and pioneering research into this condition. Find out more by looking at our research section. We aim to provide a UK focus for SMA research. However, we also believe in the importance of international collaboration and invest time and money in building relationships and improving communications with other organisations involved in SMA, whether in the UK, continental Europe, the USA or anywhere else in the world.
In 1984, a small group of parents across the country banded together to support, comfort and educate each other about the devastating disease affecting their children; Spinal Muscular Atrophy. Their purpose was twofold: to support families affected by SMA, and to fund research leading to a treatment and eventually, a cure. Families of SMA has grown from this courageous group of families to an international network of fundraising and support including 31 volunteer Chapters throughout the United States.
The Annabelle Rose Foundation aims to support sufferers of SMA and their families however it can, for example funding for car/home adaptations, funding specialist medical equipment and toys, providing families with the opportunity of short holidays for those with a short prognosis (as we know first-hand the value of such things), and provide help support with funeral costs and arrangements, as well as providing emotional support for the families affected by the condition & donating to fund research.
Part of the NHS Choices website. It provides a gateway to comprehensive sources of information for carers. The site has been developed in conjunction with the Princess Royal Trust for Carers, Carers UK, Crossroads, and Young Carers Net. It contains information about benefits, links to national and local support organisations, and a directory of services. You can ask for a call back in one of more than 170 languages.
Crossroads Care and The Princess Royal Trust for Carers merged in April 2012 to form the Carers Trust. It works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. And they provide access to desperately needed breaks, information and advice, education, training and employment opportunities.