Our Vision, Mission & Strategy

Our Vision

Everyone affected by SMA has access to the best care, support and drug treatments; research continues to bring breakthroughs that improve people’s quality of life, and ultimately aims to find a cure.

Our Mission

To provide accurate information and a wide range of support services, while working to improve access to the best care, services and drug treatments today and funding research projects that can change tomorrow.

Our Guiding Principles

Spinal Muscular Atrophy (SMA) is a complex and rare neuromuscular condition that affects each individual and their family differently. We will always be respectful of each person’s needs and choices. All face the challenge of disability and obtaining the right support, care and opportunities to enable them to live long and fulfilling lives; some face the distress of early bereavement.

Our Strategy

Providing Information and Support Services in the UK for:

  • families and individuals – personalised information about SMA; emotional and practical support; advocacy for services and access to care and drug treatments; opportunities to have contact with others affected by the condition 
  • health, education and social care professionals – information about SMA; working with them to support families and individuals 
  • the SMA Community - up-to-date information about developments in research, drug treatments, support and disability services, consultations and campaigns

Working to Improve and Monitor SMA Community Access to:

  • care and support
  • clinical trials and new drug treatments
  • equipment and adaptations

We are advocates on behalf of the SMA Community to authorities that regulate access to drug treatments, care and services. We work with other charities, health, education and social care professionals, national and international charities and organisations to campaign on issues that matter to people affected by SMA. We support developments that improve and monitor access to services and drug treatments.

Funding and Supporting Research:

Pharmaceutical companies are now investing heavily in the clinical development of drug treatments; these are important stepping stones that we will continue to monitor and support. Our funding focus will now be on projects that contribute to:

  • Understanding the complexities of SMA and the underlying disease mechanisms
  • The pre-clinical development of drug treatments   
  • Improvements in the clinical care and management of people affected by SMA
  • Continuing to support, strengthen and develop the capacity of the UK SMA scientific and clinical community

Our excellent track record of raising and delivering money to the scientific community, along with our strong connections and collaborations with clinicians, researchers, international groups and the pharmaceutical industry, ensure we are not duplicating effort when we fund and support initiatives that will ease the path to drug treatments and improvements in clinical care

Where we can make a difference, we will.

Our Fundraising

To enable us to fulfil these strategic goals we:

  • value and respect every donor
  • create engaging and innovative fundraising appeals that enable everyone to get involved
  • constantly seek new potential sources of income to help us manage uncertainty in the ever-changing fundraising environment