Amyloidosis is a rare disease, responsible for the death of about one person in every thousand who die in developed countries. There are at least 6,000 cases in the UK at any time.
The disease is caused by accumulation, within the tissues of the body, of one or other of the body’s own proteins in the form of insoluble abnormal fibres, called amyloid fibrils. The build-up of amyloid progressively damages the structure and the function of the affected parts of the body and can lead to life-threatening organ failure. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system, digestive tract and skin but can affect any part of the body, including the eyes, muscles, lungs and bladder. This means that the illness can present in many very varied ways. Unless doctors think of this rare diagnosis, the true nature of the disease is frequently not recognised for a long time and patients often have serious advanced problems before they are treated Read more about Amyloidosis.
The UK NHS National Amyloidosis Centre at the Royal Free Hospital was established in 1999 by Professor Sir Mark Pepys FRS and Professor Philip Hawkins. NHS Specialised Services funds the Centre, via the Royal Free Trust, to provide diagnostic and management advisory services for all patients with amyloidosis in the country.
The Amyloidosis Research Fund within the Royal Free Charity exists to support the world leading research and development work of the Centre. The Fund provides fully flexible resources to enable immediate investigation and implementation of novel ideas by specialised staff and new equipment with related running costs. The team at the NAC has worked on many aspects of amyloidosis for more than 40 years, making fundamental discoveries about the disease. In parallel, they have continuously devised and implemented new methods for diagnosis and treatment, leading to much improved outcomes for many patients. The 5,000 patients seen and followed each year in the Centre are the largest and most diverse cohort attending any specialist amyloidosis centre in the world, comprising a unique resource for all aspects of the study of the disease and its treatment.
Fundraising can be challenging but it is also an incredibly rewarding and fun experience. If you are sporty, artistic, creative, or just interested in helping, you could try one of the ideas below:
Many employers will match some or all of the sponsorship you raise. It’s a great way to increase the amount you have raised so check if your company participates in a matched giving scheme.
- Sponsored personal challenges such as sporting events
- Organise a cake or bake sale
- Hold a coffee morning or afternoon tea
- Put on a music event
- Organise a car boot sale
- Open your garden to the public
Using the internet is one of the most effective ways of fundraising. It is easy to set up and even people on the other side of the world can sponsor you! It’s quick and easy to donate and the amount given tends to be higher.
There are several ways you can make a donation:
By Phone: Call 020 7317 7772 (Quote Amyloidosis Research Fund 24)
By Cheque: Payable to Royal Free Charity Fund 24
Please send to FREEPOST ROYAL FREE CHARITY
(No additional address details required as this is a registered Freepost addess)
You can set up a Direct Debit to provide regular, on-going support for the research programme
The payment will go into the Royal Free Charity Fund account for Fund 24 Amyloidosis
Bank details- Lloyds Bank
Bank sort code 30-93-80
Bank account number 00279476
Account Currency GBP
IBAN GB39 LOYD 3093 8000 2794 76