Professor Sir Mark Pepys and Professor Philip Hawkins established the National Amyloidosis Centre in 1999 with direct funding from the Department of Health. The Centre has grown steadily and now sees more than 4,000 patients each year.
Research and development of new treatments for amyloidosis in the Centre have made enormous contributions to understanding of the disease and to improved outcomes for patients.
These achievements have been recognised by the award of large research grants and by the generous funding of patient care by the NHS. However, award of formal research grants takes at least 18 months or more and use of the funds is restricted to the purposes for which they were awarded. Novel, original research and development move much faster than this and there is always a need for flexible research funds that can be used whenever required for new developments and to support new ideas.
The availability of such funds, provided by the charitable donations of patients, relatives and other supporters of research and patient care in the NAC, is an invaluable resource. It enables crucial developments for the benefit of patients, which would otherwise not have been possible. Cutting edge, state-of-the-art research demands flexibility and immediate access to funding to enable exciting and promising new avenues to be explored in a timely fashion, through purchase of sophisticated new equipment and employment or redeployment of highly qualified scientific and medical staff.
With the recent transfer of the patient facing clinical activities of the NAC to management by the Royal Free London NHS Foundation Trust, rather than by UCL, charitable donations must now and henceforth be directed to the Royal Free Charity Fund 24. This fund is specifically dedicated to support the research and patient related activities of the NAC. The new arrangement carries two major advantages: firstly, investment income earned by any positive balance in the fund is transferred to the fund and, secondly, a generous donor has lately agreed to match all donations to the fund each quarter until he has donated £500,000. There is thus a unique opportunity for all donations made until this figure is reached to be doubled.
The generously donated resources will undoubtedly make major contributions to alleviating the suffering and saving the lives of many thousands of individuals afflicted by a terrible and hitherto incurable disease. Every penny is received with sincere gratitude and is used specifically and in its entirety for amyloidosis research.