Spinal Muscular Atrophy UK publishes annual report
A charity with a vision that everyone affected by Spinal Muscular Atrophy (SMA) will have access to the best care, support and treatment has published its annual report. PIF member Spinal Muscular Atrophy UK (SMA) described 2024/25 as another busy and demanding year, making special mention of its support team which provides information, practical and emotional support to countless families across the UK. The report gives updates on fundraising, community engagement, support services and advocacy among others.
Accurate and accessible information
Sharing an update on the information it provides, the charity highlights its 27 information guides and related care, treatment and management topics. Each guide is reviewed by experts and readers interested in the topic - a review system used to support its aim of producing accurate, evidence-based, up-to-date and accessible information. The charity proudly shares that the system was, once again, accredited by PIF and all of the guides carry the PIF Tick. The charity also produces podcasts and holds webinars for the SMA community.
Free counselling service and project launched
Some of SMA's other success and achievements highlighted in the report include:
- SMA UK launched a free confidential counselling service to support anyone affected by SMA.
- Continued to campaign for SMA to be added to the Newborn Screening Programme.
- After several years of planning, in July 2024 the SMA Care UK project was launched by clinicians and patient groups. It will update or develop, promote and implement high-quality care for people of all ages living with spinal muscular atrophy across the UK.
- Six new podcast episodes were released and SMA worked with Biogen to create a new exercise app.
- The Adults Perspectives Report was published focusing on the experiences, priorities and recommendations for adults living with SMA in the UK. The report was the outcome of two workshops which brought together adults living with SMA and specialist clinicians.
To read the full annual report visit the SMA UK website here.