1985: The Jennifer Trust

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. 

See also:


From the Jennifer Trust to SMA UK - Milestones