Help for today and hope for tomorrow

PATIENTS ADVANCING RESEARCH
 
There’s a feeling of helplessness when parents are told that their child is terminally sick and that nothing can be done about it. Anita Macaulay set up the Jennifer Trust in 1985 following the death of her seven month old daughter Jennifer from severe Spinal Muscular Atrophy (SMA) – type I, and like many parents, she wouldn’t believe that “nothing can be done”. She originally meant the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) as an organisation to support families with children diagnosed with SMA, but less than 25 years later, the Trust is now a catalyst for research.
 
“In 1985 the disease was very poorly understood and there were only a few known cases each year. There was limited support for parents and no shared knowledge, which meant that organisations like the Jennifer Trust were needed to support a better understanding of spinal muscular atrophy. This was strengthened by the Jennifer Trust’s close affiliation with the US Families of SMA as well as the sister organisations in the EU. Together across the Atlantic and working with many different families who experienced the impact of SMA on their lives, the interest in and support for spinal muscular atrophy grew. In the late 1980’s the Jennifer Trust were seeking a SMA diagnostic kit, and this also led to interest in family databases,” recalls Joseph Irwin from JTSMA.
 
The JTSMA funds research work into the genetics of Spinal Muscular Atrophy in the hope that better knowledge will provide improved treatment of the condition. This work has already resulted in pre-natal testing for the genes responsible for causing SMA, and is helping towards increasing understanding of why the effects of the condition vary so widely.
 
The Jennifer Trust also provides funds for research into the most suitable medical and therapeutic treatment for people with Spinal Muscular Atrophy. Research projects supported by the Jennifer Trust over the years have included a project to analyse the effects of seating posture on spinal deformation, and a project to ascertain the benefits from various respiratory equipment for people with SMA. “We currently receive no statutory funding - either for research or support services. All our funding comes from donations from individuals, grant-making Trusts and Foundations, events, and corporate giving. The fundraising team at The Jennifer Trust send literally hundreds of applications to grant-making bodies for amounts ranging from a few hundred pounds to thousands. Many families who have been supported by The Jennifer Trust are generous with their time and energy in fundraising activities that enable us to pay for both research and frontline support. Events like marathon runs, treks and challenges bring in sponsorship money, and schools and workplaces often choose us as their Charity of the Year,” says Joseph Irwin.
 
The JTSMA shares a special relationship with the scientific community. “When the Jennifer Trust was first set up, the campaigning zeal of the founder and the first helpers did an enormous amount to gain the attention of clinical and research staff, and the relationship has grown into one of real partnership. The Jennifer Trust has been instrumental in helping to support research, not only by funding specific research projects, but also by facilitating networking events that bring together eminent researchers from all over the UK and internationally. For example the 6th UK SMA Researchers' Meeting, which was held in Edinburgh in October 2009, was jointly funded by the Jennifer Trust and SMA Trust and attracted representatives from every UK centre involved in SMA research, as well as delegates from Italy, the Netherlands, Portugal, and the Czech Republic. There are also good links and exchanges of information with research bodies and support groups in the USA,” explains Joseph Irwin.
 
Even if Anita Macaulay’s organisation has grown and flourished into a trust with a reputation for funding cutting edge research, it does not forget to support families and spread awareness about SMA. “In a consultation we ran with our members in early 2009, feedback demonstrated that families regard research as an important part of the Jennifer Trust’s role, but that it should not be prioritised over frontline services. So far we have always been able to support research without compromising frontline support,” says Joseph Irwin. After all, that’s exactly what the Jennifer’s Trust motto is all about: help for today and hope for tomorrow.
 

Author: Nathacha Appanah
Photo credits: © JTSMA & Jennifer Trust Bebo