Our Strategy for Research
It is an exciting time for SMA research as there is now a number of world-class research groups studying the disease. The Jennifer Trust has therefore developed strategic goals to assist in choosing where its contribution to research will be targeted.
We will seek to ensure that:
- Interested UK citizens with SMA have the opportunity to take part in clinical trials or other forms of research, or to benefit from that research.
- We work with the international research community to promote, facilitate, and influence SMA research and clinical trials and to emphasise the important role of the patient group.
- We maintain good links with the research community and key people within it.
- In particular, we will work through SMA Europe, TREAT-NMD, and the International Coordination Committee on Drug Development, and Eurordis to achieve our goals.
- We provide regular updates and information about research developments in accessible language to those we support, our members and the wider community.
- We are represented at key conferences or other research events.
- We receive feedback from conferences and events and make this information available to those we support, our members and the wider community.
- We contribute financially towards a limited number of research projects each year.
- We liaise with other funders and seek to achieve positive funding partnerships.
The Jennifer Trust has a small subcommittee of the Board of Trustees that meets regularly, mostly by telephone conferencing, to review our strategy, discuss current research issues and make recommendations to the full board.
