Our Vision, Mission & Strategy
A world where Spinal Muscular
Atrophy is treatable and where anyone affected by any form of SMA receives the support they need.
To provide information and support, campaign and advocate so that everyone in the SMA community can access the best care, services and treatments and benefit from continued research.
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. We will always be respectful of each person’s individual needs and choices. Additionally, the development of new treatments is creating new opportunities and challenges for the SMA community.
Support and Information
We will provide:
- families and individuals with personalised information, emotional and practical support, and opportunities to have contact with others affected by the condition
- health, education and social care professionals with information about SMA, and work with them to support families and individuals
- the SMA community with up to date information about developments in research, drug treatments, support and disability services, consultations and campaigns
Advocacy and Campaigning
Our focus is to achieve better access to:
- care and support funding
- equipment and adaptations
- clinical trials and new treatments
We will work with those wanting personal support to advocate for individual access. We will join with other charities, health, education and social care professionals and national and international organisations to advocate and campaign for better general access.
Our strong connections and proactive work with families, clinicians, researchers, international groups and the pharmaceutical industry will enable us to contribute to initiatives that:
- ease the path to access to drug and other treatments
- improve the lives of people affected by SMA
- further advance understanding of the complexities of SMA