SMA UK are committed to helping those affected by SMA throughout their lives. We provide information and support to newly diagnosed families and individuals and go on to help with issues such as arranging care packages and starting school. We facilitate sharing experiences virtually and in person.
Spinal Muscular Atrophy is a rare condition which affects around 70 babies born each year in the UK. The number living with SMA is increasing thanks to the recent introduction of available treatments. Those who have been newly diagnosed need accurate and up to date information as well as emotional and practical support. Most children and adults now living with SMA have complex needs and require guidance on a wide range of issues, as well as the opportunity to meet others with the condition.
Our Outreach & Support team provide information and support via telephone, email, video calls and in person. Assisting newly diagnosed families is key, but they will respond to any query related to SMA and bring a personalised support service. To give our beneficiaries the chance to share experiences we now have three Groups (families, teenagers & young adults). In 2023 we are holding 3 in-person family events, as well as an activity weekend for adults and we plan to continue this in 2024.