We have been supporting the SMA Community since 1985, when very little was known about spinal muscular atrophy and there was no practical or emotional support available to parents of diagnosed children or for those living with SMA. Our small support services team of six, based in Stratford upon Avon in Warwickshire, have experience in social work, nursing, occupational therapy, mental health and education. They provide a wide range of services, free of charge, to anyone affected by SMA in the UK who needs our help.
SMA affects 1 in 10,000 births and it is estimated that 1 in 40 of the population are carriers of the faulty gene. Around 670-1,340 people in the UK are living with SMA. We provide direct support to an average of 230 people affected by SMA each year, together with their families, and are in touch with over 600 affected households and 340 bereaved families. 60-70% of those we support each year are aged under 25. Until the recent development of new treatments, a baby born with SMA Type 1 would only have an average life expectancy of two years.
The support we give includes providing accurate, specialist and up to date information on the condition and providing compassionate help and practical advice by phone, email, Zoom and home visits (when restrictions allow). We may be helping the parents of a child who has just been diagnosed with SMA, an adult who isn’t able to access the financial or medical support they need, a teenager who is about to start college or move to independent living or a family trying to access treatment for their baby with SMA.
For each family we provide individually tailored compassionate, professional and specialist support to help them on their unique journey with spinal muscular atrophy, to ensure that they:
• are well-informed, to empower them to manage the condition and their choices of support and potential treatments • have better access to the services, funding and equipment they need to improve their quality of everyday life • feel connected with others who care and understand, to reduce isolation, improve mental health and enhance their sense of wellbeing.