About Jennifer Trust for Spinal Muscular Atrophy

The Jennifer Trust exists to support children and adults who have SMA and their families; offering support, advocacy, education and information to both families and heath care professionals as well as funding research.

The Trust works with a group of SMA organisations from across the world dedicated to giving ever better support and care and the funding of research.

As part of this work the charity is able to offer:

• A quarterly newsletter
• A UK network of Volunteers - who offer support, friendship and information
• A range of specialist fact sheets
• A Free Phone Helpline for parents and adults with SMA for information and support
• Annual conference and regional information days
• Grants for specialist equipment and welfare

Our history

The Jennifer Trust was founded in 1985 at baby Jennifer's funeral.

Jennifer's mother felt that 'something had to be done' for babies and children like Jennifer and their families by giving practical support and funding research.

The Trust became a registered charity in 1988. It hosted the first international workshop on SMA in 1991, held in the UK.

An International Alliance was formed with sister groups in the USA and Australia as a commitment to work together across the world to find a cure and provide the best up to date information for people whose lives had been affected by the abnormality.

The SMA gene location was discovered in 1990 and the actual gene isolated in 1995.

By the mid-nineties the Trust was expanding, consolidating its role in fundraising for research and for the production of accessible and easily understood information.

A three-year strategy was developed to raise the profile of the Trust, produce new literature, plan events, and provide a systemised database.

In 1998 the National Lottery (NLCB) granted 3 year funding for the Independent Living and Life Choices Service, which was designed for 16-25 year olds living with. A national Training and Information Service was also established.

In 2000 Research scientists announced another major breakthrough. A mouse model with SMA characteristics had been treated by replacing the SMN2 gene, which subsequently led to the SMA being corrected before any symptoms were apparent.

In 2002 the Trust's Chief Executive was appointed as Chairman of the European SMA taskforce- collaboration of European SMA groups with a goal of co-ordinating and funding research and promoting best management practice.