What we do
What we do
In May 2023, Giles Lomax joined the charity as CEO to lead the charity into its next phase.
“It’s evident from the 2022/23 annual report that SMA UK continue to do such vital work on behalf of the SMA community. Being a father of twins who have SMA type 2, I have firsthand experience of the challenges the condition brings to families and individuals and understand the power the charity can have on changing the lives of people living with SMA.
I believe that those personal experiences will add significant value to the organisation as we continue to raise awareness for the condition, strive for change and ensure that anyone affect by SMA can live fulfilled and happy lives.” Giles Lomax, CEO
Our Strategy
Supporting
Our Outreach Team provides personalised practical and emotional support for all those affected by and living with SMA. From access to care and drug treatments to opportunities to have contact with others affected by the condition.
We support families and individuals to access funding for specialist equipment and wheelchairs as well as supporting travel to appointments and overnight stays.
Informing
We provide health information accredited by the Patient Information Forum to the SMA Community, health care professionals and all those affected by SMA.
We are abreast of the latest developments in research, drug treatments, disability services, consultations and campaigns and communicate these to the SMA Community.
Advocating
We advocate 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.
Since 1986, we have raised and donated over £5 million in support of research. Our strong connections and collaborations with other UK and international SMA charities and groups, clinicians, researchers and the pharmaceutical industry, ensure best use of any funds we allocate to research-related initiatives.
Where we can make a difference, we will.
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 obtaining the right support, care and opportunities to enable them to live long and fulfilling lives; some face the distress of early bereavement.
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