SPINAL MUSCULAR ATROPHY UK

Our small charity was set up over 30 years ago by Anita Macaulay who sadly lost her daughter, Jennifer to SMA Type 1. Since then, we have been continuing to develop the work she began. At any one time it is thought that there are between 2,000- 2,500 children and adults in the UK living with SMA. SMA UK is in contact with some 2,000 people living with the condition and their families and support networks. We have a small, experienced and qualified support services team who deliver our core services these include a free Outreach, Peer Support and Information Production Service. These core services provide information, emotional support, practical advice and guidance. This may be by phone, e-mail or a home visit. We would welcome any contribution to help fund our core services to support anyone affected by Spinal Muscular Atrophy. Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition and may affect crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing. SMA is often grouped into ‘Types’. Types of SMA are based on the age at which symptoms first appear and what physical ‘milestones’ a baby or child is likely to achieve. Milestones can include the ability to sit, stand, or walk. There are four main types of SMA: Types 1, 2, and 3 appear in childhood.

SMA Type 1: This is the most severe form, with symptoms usually appearing before a baby is six months old and sometimes before birth. Babies are unable to sit without support. Sadly, usually due to breathing difficulties, most children with SMA Type 1 rarely survive beyond two years of age.
SMA Type 2: The symptoms of SMA Type 2 usually appear between the ages of 7 and 18 months. Children with SMA Type 2 are unable to stand without support. Though this is a serious inherited neuromuscular condition that may shorten life expectancy, improvements in care standards mean that the majority of people can live long, fulfilling and productive lives.
SMA Type 3: The symptoms of SMA Type 3 appear after 18 months of age. Children are able to stand and walk, although they may need more support with this over time. Life expectancy for children diagnosed with SMA Type 3 is normal and most people can live long and productive lives.
SMA Type 4: The symptoms of SMA Type 4 appear in adulthood and may include mild to moderate muscle weakness in the hands and feet, and some difficulty with walking. SMA Type 4 is also known as Adult Onset SMA and is not life-threatening.

We are the only SMA support charity in the UK accredited to The Information Standard, and dedicated to supporting people affected by SMA. Although we are a national charity we only have 12 paid staff and one office.