Our Vision and mission
A world where Spinal Muscular Atrophy is treatable and where anyone affected by any form of SMA receives the support they need.
We are an established charity that supports and empowers anyone affected by Spinal Muscular Atrophy. We are advocates for better services and access to new treatments so that people affected by SMA are empowered and enabled to live full lives. We are committed to help fund and facilitate research and to raise public and professional awareness of SMA.
Our Guiding Principles
Spinal Muscular Atrophy (SMA) is a complex and rare neuromuscular condition which affects each individual and family differently. Some face the distress of early bereavement; others face the challenge of disability and obtaining the right support, care and opportunities to enable them to live long and fulfilling lives.
At SMA Support UK we will ensure, both within and outside our SMA Community, that we are sensitive to these different experiences.
Our Strategy. April 2017 – March 2018
- listen to, support and empower families and individuals affected by SMA and provide personalised support, information and other services
- support health, education and social care professionals providing services to the SMA community
- offer individuals and families affected by SMA opportunities to meet with others at information, support and social events
- inform the SMA community of latest SMA related research developments, support/disability service updates, consultations and campaigns
- fund and facilitate initiatives that:
- strengthen the connections between families, researchers and medical practitioners;
- improve the management and treatment of the condition;
- advance progress towards and access to major clinical drug trials
- Ensure the maximum impact for our work
- through partnerships and alliances with other national charities and international groups;
- by working with the UK health, education, social care and research communities
- offer individuals, families, trusts and businesses, opportunities and innovative ways to support and fund the charity’s work