3 Charities Supporting People with Spinal Muscular Atrophy (SMA) in the UK

Spinal Muscular Atrophy (SMA) is a rare genetic condition that causes progressive muscle weakness and can significantly impact mobility, breathing and daily life.

In the UK, around 1,500 people are currently living with SMA, with new cases diagnosed each year.

Because SMA is complex and often lifelong, families and individuals benefit hugely from condition-specific charities that understand the medical, emotional and practical challenges involved.

These organisations provide targeted support, community connection, specialist advice, and in some cases funding or equipment.

1. Spinal Muscular Atrophy UK (SMA UK)

SMA UK is the leading national charity dedicated entirely to people affected by SMA. Established in 1985, it provides holistic, lifelong support to children, adults and families living with the condition.

Their services include:

• Emotional and practical support via phone, email and online

• Guidance on treatment options, care, education and benefits

• Help accessing equipment and funding

• Community connection and peer support

• Resources for schools and professionals

They also run initiatives like SMArt Moves, helping people access mobility equipment such as powered wheelchairs much faster than through statutory routes.

Visit: https://www.smauk.org.uk

2. Spinal Muscular Atrophy Support UK (The Jennifer Trust)

Also known as The Jennifer Trust, this long-standing charity provides information, grants, and community support for individuals and families affected by SMA.

They offer:

• Welfare grants for specialist equipment

• Family support and guidance

• Educational resources and publications

• Annual conferences and networking events

• Local support contacts and peer connection

The organisation has around 1,500 members and places strong emphasis on building community and shared experience, helping families feel less isolated.

Visit: https://www.smasupportuk.org.uk

3. The Annabelle Rose Foundation

The Annabelle Rose Foundation is a UK charity set up by parents who lost their daughter to SMA. It focuses on supporting families emotionally and practically, while also contributing to research and awareness.

Their work includes:

• Supporting families facing diagnosis and bereavement

• Raising awareness of SMA and its impact

• Contributing to research and understanding of the condition

Because it was founded from lived experience, the charity has a strong emphasis on emotional support and understanding the real-life impact of SMA on families.

Visit: https://www.annabellerosefoundation.co.uk

4. Muscular Dystrophy UK (Neuromuscular Support Including SMA)

While not SMA-exclusive, Muscular Dystrophy UK supports people with a wide range of muscle-wasting conditions, including SMA. They provide:

• Access to research updates and clinical information

• Community events and information days

• Advocacy for better care and treatment access

• Support networks for people with neuromuscular conditions

They regularly run events where people with SMA and related conditions can meet others, hear from specialists, and learn about managing daily life and health.

Visit: https://www.musculardystrophyuk.org