Author Topic: A MUST read.....  (Read 3167 times)

patpinchin

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A MUST read.....
« on: August 09, 2016, 08:21:42 pm »

Wayne Shaw of the Window Company is very keen for every NAC patient and their family members  to read the letter below. Wayne and his company team have recently raised £8,163,15 for the UCL Amyloidosis Fund and today he received the letter below from Professor Sir Mark Pepys. Some forum members contributed to his justgiving appeal so Wayne would like everyone to know just how much Sir Mark and the NAC team appreciate their enthusiastic efforts to raise extra funds for amyloidosis research and how that specifically benefits patients in so many ways. There are so many important and interesting details in the letter which Wayne feels most patients do not know about. It is Wayne's hope that next time a fundraising event is advertised even more patients will feel inspired to donate to the appeal for the Amyloidisis Research Fund which plays such a unique role in accelerating research activities and drug development by changing our lives for the better.

Dear Wayne
 
I am writing to thank you very warmly and sincerely for the extraordinary fundraising efforts you have undertaken on behalf of the UCL Amyloidosis Research Fund.  The very generous donation delivered to us, with a huge cheque, last week by Lesley and her sister is very gratefully appreciated and will definitely be of great use to support our vigorous ongoing efforts to improve the diagnosis and treatment of patients with amyloidosis, as well as to enhance awareness of this dreadful disease.
 
A major problem with amyloidosis is that it is sufficiently rare that most doctors have never seen, or at least never recognised, a case.  They therefore don’t think of it when a patient presents, either with a common set of complaints that can have many causes, or with a complex and unusual set of symptoms.  If you don’t think of it you can’t diagnose it and, as a result, many patients are not diagnosed for several years after they first become ill and it is then often too late for treatment to be effective.  Also there are some types of amyloidosis for which no treatment yet exists other than merely supportive measures.
 
I have been working on this condition for 40 years, during which there have been major steps forward for the benefit of patients.  Better understanding of the disease in my laboratory led to my invention of a new diagnostic test which transformed understanding of the natural history and the response to treatment.  It also led to the formation of the NHS National Amyloidosis Centre which is the world’s leading centre for research, diagnosis and treatment advice.  More recently I have devised a new approach to treatment which is progressing slowly but very encouragingly through the very complex and costly processes of drug development.  Most of this work has been supported by the taxpayer, via grants to us from the Medical Research Council and funding from the NHS, but also charitable donations via the major medical charities.  My new treatment is being developed by GlaxoSmithKline, one of the largest international pharmaceutical companies.  We are therefore in a strong position to carry on our work but, nevertheless, the flexibility of the resources in the Amyloidosis Research Fund provides a value far beyond the sums nominally available.  We are accordingly able to undertake new ventures at short notice, with funding for staff, equipment, laboratory and clinical studies.  Often these are activities for which research or clinical grant support is not available or takes years to obtain, thereby greatly impeding our progress.
 
Two current examples are:
 
1.  The Amyloidosis Awareness programme, which is very active and is greatly appreciated by patients, relatives and friends.  You can see all about it at www.amyloidosis.org.uk.  It does a fantastic job but obviously costs money so our capacity to fund it is crucial.
 
2.  We urgently need a new mass spectrometer to provide both for typing of amyloidosis, which determines the correct treatment, in about 1,000 patients per year and for exciting new research on the mechanisms of the disease which are leaidng towards new treatments.  We need a very complex and sophisticated instrument costing about £550,000.  I am applying to the Wolfson Foundation for most of the money but the fact that we can tell them that we are contributing £100,000 immediately from the Amyloidosis Research Fund greatly increases their confidence in our studies and will help dramatically towards a successful outcome.
 
You can thus see how your present donation will instantly be significant in our work and, most importantly, in also commemorating John.
 
Once again, with many thanks and kindest regards
 
Yours sincerely
 
Mark Pepys
 
Professor Sir Mark Pepys FRS FMedSci
Director, Wolfson Drug Discovery UnitWhy the Amyloidosis Research Fund needs our support.
Pat