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'The Jennifer Trust for Spinal Muscular Atrophy' changed its name to 'Spinal Muscular Atrophy Support UK’ in April 2014. The decision was made after a long period of research and consultation.  

Why a name change? 

The Jennifer Trust was one of many small charities operating in a crowded market and fighting for a limited amount of funds. Like many other charities, we closely reviewed how we can best present ourselves to those who might need to use our services and to those who might support and fund us. The main reason to change the name was to give greater prominence to the condition, Spinal MuscularAtrophy. This we felt was particularly important so that individuals and families faced with a new diagnosis of the condition could more easily find us. It was also important for our fundraising team, who needed a name which at first glance gave as much information about the charity to potential donors as possible.

Finding a new name

The trustees and staff members worked for more than a year with two experts in branding and communications who gave their time and effort for free. They looked at a whole range of names to find one which would do three things:

  • display the name of the condition clearly;
  • describe the work done by the Jennifer Trust; and 
  • give a better sense of the warmth and connection currently transmitted in the name 'The Jennifer Trust'.  

Everyone agreed that the primary focus of our work is support; this support is offered to individuals and families, the health and social care communities through information and support services and also to the research community through our funding and collaboration, which we offer across the whole of the UK.  

When the best two names which fulfilled these goals were agreed, we consulted our members (people who have signed up as voting members of the organisation) and a cross section of other people who support us and people we support. We asked them to vote on which should be the new name, with the overwhelming majority choosing 'Spinal Muscular Atrophy Support UK' which was also the preferred choice of the staff and trustees.  

We believe the new name describes the condition and the main focus of the work we do while making it clear that wherever you are in the UK, we are there for you. It was agreed that the existing 'Help for Today, Hope for Tomorrow' strap-line should remain as it complements the name very effectively. 

Our new look

Once the name was agreed, our volunteer consultants found designers to come up with a variety of logos to consider. Again, trustees and staff were consulted and we finally agreed on the logo you see today. The curves represent supportive hands or arms - the ‘help for today’; the unfurling frond represents the new work and research - the ‘hope for tomorrow’. We believe it is a warm and welcoming image for all those whose lives are affected by SMA, whatever, their specific diagnosis, their age or their connection. But it is also strong and distinctive, and in combination with the new name and the continuation of the previous strapline, it will ensure our charity makes a visible and lasting impression.


Remembering where we came from

The trustees and staff were clear throughout the process, and this was reinforced from the feedback provided during the voting process, that despite a change of name we wanted to ensure that we did not forget Jennifer and the commitment of her mother Anita Macaulay who started the Jennifer Trust 28 years ago after her daughter died ofSpinal Muscular Atrophy Type 1. Those closest to Anita told the trustees that they were sure she would have supported the change of name. Her son, Stuart, wrote:

"..  I came to the conclusion that this was a question of reaching out; that JTSMA could reach more families and obtain more funding under a different name. I remembered how important the charity’s support-role was to my Mum and why she set the charity up: because there was no support group for her to turn to. I thought of the people who might not be reached by the charity under its current name, and how the charity could gain more money to provide more support to those it is already in contact with and increase awareness of the charity... I have no doubt my Mum would have supported the change of name in the charity."

At the time, our Chairman of Trustees, Jonathan Griffith, said:

"The decision to change the name of the Jennifer Trust which is so well respected and we are all so fond of and familiar with was never going to be easy. Nevertheless I believe we need to put ourselves in the best position to raise awareness and support those impacted by the Spinal Muscular Atrophy condition. Our new name SpinalMuscular Atrophy Support UK I believe will allow us to do just that, and expand and build on all the excellent and successful work we have achieved over the past 28 years."