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Exciting News - We Are Thinking About Merging With The SMA Trust

04 July 2018

Exciting News - We Are Thinking About Merging With The SMA Trust

Dear SMA Support UK Community

We have some important news we want to share with you:

As a member, fundraiser, donor or supporter, you may be aware that over the past few years we have been working closely with The SMA Trust, especially as we have advocated together for access to the new treatment, nusinersen (trade name SpinrazaTM). Recently, our conversations have developed further and we have been meeting to explore the possibility of combining to form a single organisation, which is why we are writing to you now and why The SMA Trust is also writing to their supporters.

We firmly believe merging the two charities would be an enormous step forward for the SMA Community.

Our vision is to:

  • become a single, united, dynamic national organisation
  • produce our SMA-related information and research updates
  • offer our individualised ‘outreach’ support service
  • provide opportunities to meet up and share experiences
  • increase our efforts advocating for access to treatments, clinical trials and better services
  • fund groundbreaking research
  • combine our expertise to allow us to work more effectively with other partners to influence government and other stakeholders on the issues that matter to you.

Coming together also makes practical financial sense. With less money to go around, times are challenging for charities. There are many good causes competing for funding and this reality won’t change. Bringing our two charities together would save money. Put simply: we would be able to deliver more for the community, for every pound raised.

With treatments advancing, we will need to continue to work hard for access for all. Adults, children, young people, and families will continue to need support during these times of austerity and cuts to services. There will be a need to build on the research momentum and help fund ‘cutting edge’ science. It is a time of huge changes and challenges which is why we feel now is the right time to unite.

In terms of naming the new charity, we think that Spinal Muscular Atrophy UK (SMA UK for short) would make most sense. It’s simple and clear, it’s about the condition and is UK-wide. It’s also close enough to our current name not to cause more confusion and to ensure that we don’t lose all the good ground we have gained since our rebrand in April 2014.

What do you think?

We would really like to hear your views on this and, as we imagine you may have more questions, we have put together some Q & As which you will find here.

We have also set up a survey which we hope you will respond to – it should only take 5 minutes and you can find it here: 

The questionnaire has a closing date of 15th July and both we and The SMA Trust want to make a final decision by the autumn. We would then work on the detail in the most cost-efficient way, giving priority to our day-to-day work on the key issues that matter most – support, advocacy work and continued fundraising.

We look forward to hearing from you.

Jonathon Griffith