We are excited to share with you our brand refresh!

The needs of the SMA Community are ever changing and we felt that our website, which is our main communication window, needed to deliver information clearly as well as being a platform where the SMA Community’s voices can be seen and heard, centre stage.  

As the decision was made to develop our website, we felt it was also the right time to incorporate a brand refresh in line with the new site. It was important that we gave the brand a refresh rather than change it completely and wanted a design that represented the charity’s mission as a forward thinking, modern and agile, one that can be trusted and recognised as the lead voice for all people living with SMA and their families.  

So that we made sure we met the needs of the SMA Community within the website and branding, we created a Website Development Committee consisting of a range of people living with SMA, their families, supporters of the charity and staff. The result is a brand and website that has incorporated their valuable feedback and we are very grateful for their input.  

Our new strapline, Supporting, Informing and Advocating highlights the work we do alongside the SMA Community and are areas that we continue to build on as a charity. 

Following our July 2022 Annual General Meeting, our members voted overwhelmingly in favour (101 for, 1 against and 6 at proxy discretion) of SMA UK converting into a Charitable Incorporated Organisation (CIO).

This means that we now have to report only to the Charity Commission, not also to Companies House. It is a way of recognising that describing the organsiation as a membership body, which we were set up as in 1985, was a little outdated; we are now actively communicating by way of our newsletters, social media and networks to a much wider group of people affected by SMA, with no additional or exclusive benefits for members.

The CIO model was introduced in 2013 and has been adopted by many smaller charities like ours, as being less costly to administer.

We are very keen to keep our very loyal members and followers closely involved with the development and work of the charity, and will be continuing / working on our general communications to ensure this is the case.

You can read the new constitution here

The Merger: In September 2018, after extremely positive feedback from the SMA Community, The SMA Trust and SMA Support UK merged to become Spinal Muscular Atrophy UK. The next step was the challenging task of finding a way to reflect the legacy of the two charities in a new logo and brand.

Supporters led the way: We listened to as many different points of view as possible, consulting with a large sample of supporters from both previous charities – adults with SMA, families who have children with SMA, and families who have sadly been bereaved by SMA.

What they said: Many told us that, although vital, research is more of a concern at a later stage. They felt the SMA Trust’s chromosome logo, was more

medical, a bit colder, but still positively progressive. Also, they pointed out that genetic symbols and imagery are regularly now used for a range of ‘brands’ – from medical conditions to genome analysis – and would struggle to be unique

Families of children with SMA told us that after initial diagnosis, when they had been looking for an organisation to help, a caring, nurturing feel was key. The SMA Support UK logo worked for them, with its softer lines, described by some as looking like it’s cradling and supporting.  (For the full story about why this logo – based on a koru or unfurling frond – had been used by SMA Support UK, please click here.)

All said they didn’t want to see us start again with a complete re-brand of the organisation. They wanted to see an evolution of what we had, a respect for the amazing work already completed by both charities and as little money spent on the whole process as possible.

The design: Based on this feedback our designer created our new logo evolving the koru, which our supporter consultation group really liked. The image was hand drawn to retain gentle lines and uniqueness. Our name appeared in a softer font, to show our charity’s supportive and open approach and, following our supporters’ advice, we used the blue/teal colour of The SMA Trust.

We hope you will agree that we now have a logo that will take us into the future. Electronic changes on our website are straightforward and we will finish using up the very limited stocks we have of any printed leaflets and stationery. We will be rolling out the changes to our branding over the coming weeks. We can honestly say this has been all been achieved at a really low cost and can’t thank our supporters enough for their guidance throughout.

In 2013, 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, it closely reviewed how to best present itself to those who might need to use its services and to those who might provide support and funding. The main reason to change the name was to give greater prominence to the condition, Spinal Muscular Atrophy. This was felt to be particularly important so that individuals and families faced with a new diagnosis of the condition could more easily find the help they sought. It was also important for the 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 the work was support; offered to individuals and families, the health and social care communities through information and support services and also to the research community through funding and collaboration. All of this was offered across the whole of the UK.

When the best two names which fulfilled these goals were agreed, members (people who have signed up as voting members of the organisation) were consulted as well as a cross section of other people. When asked to vote, the overwhelming majority choosing ‘Spinal Muscular Atrophy Support UK’ which was also the preferred choice of the staff and trustees.

It was agreed that the existing ‘Help for Today, Hope for Tomorrow’ strap-line should remain as it complemented the name very effectively.

The new look

Once the name was agreed, the volunteer consultants found designers to come up with a variety of logos to consider. Again, Trustees and staff were consulted and finally agreed on the logo you see here. The curves represented supportive hands or arms – the ‘help for today’; the unfurling frond represented the new work and research – the ‘hope for tomorrow’.

It was felt to be 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 was also strong and distinctive, and in combination with the new name and the continuation of the previous strapline, it was felt it would ensure the charity would make a visible and lasting impression.

The SMA Trust (SMAT) was founded in 2003 by two SMA families with the ambitious goal to change the horizons of those with SMA – to help find a therapy for SMA.

The main activity of SMAT was to boost UK and European research by funding scientists. We were lucky enough to have senior scientific Trustees such as Sir James Gowans, Angela Vincent and Kevin Talbot join our team and we funded over £3million of research (80+% of UK private funding into SMA research).

SMAT was always committed to collaboration and worked closely with SMA Europe, the SMA Foundation, MDUK and of course the Jennifer Trust / SMA Support UK. Having helped achieve the goal of finding therapies it was decided to merge with SMA Support UK and create a unified national charity.

The spirit of SMAT lives on the commitment of SMA UK to create radical improvements in the lives of those with SMA and their families.

The Jennifer Trust was founded by Anita Macaulay whose baby Jennifer died aged 7 months from Spinal Muscular Atrophy
Type 1.

When Jennifer was diagnosed, Anita was told the condition was so rare there were probably only a handful of other parents in Britain who had experience of it, there was no research being made into the SMA, and there were no organisations out there to offer her support. At Jennifer’s funeral, Anita vowed to change that. She set up the ‘Jennifer Trust for Spinal Muscular Atrophy‘ in 1985 to offer support and hope to other families affected by the different types of SMA. Her aim was to make sure no one had a similar experience to her.

From Anita’s commitment, The Jennifer Trust grew to become the leading charity for Spinal Muscular Atrophy support in the UK, offering a very personal service to families and individuals affected by SMA. It also became a trusted source of the latest information on best practice for managing the condition, ongoing research and clinical trials as we link up with professionals working in this field. Its work continues through Spinal Muscular Atrophy Support UK.

Jennifer’s Legacy

Anita Macaulay started The Jennifer Trust in her spare bedroom in her spare time. She roped in her parents, Pam and Ron, her sister Stephanie and another mum, Maria Brice. She had made contact with other parents with a similar experience through a mother and baby magazine.

Now her work began in earnest and in 1986 The Jennifer Trust got charitable status and had a turnover of £4,362. Anita quickly inaugurated what became an annual conference for families to meet for mutual support and in years to come hear about the latest research. In 1991, The Jennifer Trust employed its first member of staff, Anita’s friend Heather Brown, who was followed soon after by Anita herself who left her job and became the second employee.

Anita’s early work was with the research community. She set out to encourage them to start looking into SMA. As a result of her determination there is now a flourishing research effort to find, not just a cure but networks and mechanisms to improve practical management of the condition.

The support work continued with a growing volunteer network, initially called the Contact Volunteers Network, later the Peer Support Network. In April 2006 the Trust employed two outreach workers to visit families in their homes and offer them support.

One month later, in May 2006, Anita Macaulay died suddenly aged 49. Her death was felt keenly amongst the SMA community where she was held in great affection. She had worked for 21 years to make things better for families and individuals affected by SMA and tributes posted to her on The Jennifer Trust website reflected just how much her work was valued by those who she met and helped.

After Anita’s death The Jennifer Trust’s work continued.