Thirusha Lane, Lead Nurse at the NAC and David Hutt, Lead
Nuclear Medicine Technician, arrive at John O'Groats at the
end of their charity bike ride that raised nearly £100,000 for
a new MRI suite at the NAC
National
Amyloidosis
Centre
News
ISSUE 5: February 2015
Visit our new NAC online patient support forum at www.amyloidosis.org.uk/forum. Patients with
amyloidosis sometimes feel isolated and appreciate the chance to meet others in a similar situation. We
hope the forum will provide a channel for patients with amyloidosis, family, friends and carers from all
over the UK to connect, communicate and help each other.
Introduction
Diagnosis and treatment of amyloidosis are never static. Our understanding
of the underlying disease and of how best to treat patients is constantly
evolving, thanks to the busy research programmes at the NAC and the
Wolfson Drug Discovery Unit. This newsletter includes reports on some
highlights of recent NAC publications. These help to illustrate how active the
NAC team are in advancing knowledge and understanding of diverse aspects
of amyloidosis. Two of these papers raise hopes that newly available
treatment directions may benefit even high risk patients with AL amyloidosis.
We also report on the recently published new guidelines for treatment of AL
amyloidosis, authored by the NAC doctors. We hope that these will help all AL
amyloidosis patients in the UK to receive the best possible standard of care.
Other recent NAC publications mentioned here include a review of a very rare
type of hereditary amyloidosis called AGel amyloidosis and a study showing
how cardiac MRI findings can help predict patient outcomes.
The NAC staff are very grateful to the many fundraisers who have been so
busy recently and much of this newsletter is devoted to reports on their
activities. The Land’s End to John O’Groats bike ride was a huge success,
raising both money and amyloidosis awareness across the length and breadth
of the UK. Patients and families turned out to support the NAC team and to
ride alongside them all through their gruelling journey. Press coverage of the
ride included a radio interview on BBC Radio Tees and several articles in local
newspapers along the route, which we have reprinted on pages 6-8 of the
newsletter. So far the ride has raised nearly £100,000 towards the
establishment of an MRI suite at the NAC. The NAC team are very excited
about this development, as ongoing research is constantly highlighting the
value of MRI in evaluating patients with amyloidosis in the heart. Once an
MRI facility is built at the NAC, it will be possible to scan more patients,
waiting times will be shorter and research studies will be facilitated.
IN THIS ISSUE
Introduction
1
Highlights of Recent
NAC Publications
New AL guidelines
AL treatment studies
AGel amyloidosis study
MRI of the heart helps
predict survival in
AL amyloidosis
2
2
3
3
Fundraising News
LeJoG
Martin’s tour de force
Pattie Wilson’s 28 mile
walk in aid of amyloidosis
research
11
Donations
12
National Amyloidosis Centre, UCL Division of Medicine, Royal Free Campus, Rowland Hill Street, London NW3 2PF, UK
www.ucl.ac.uk/amyloidosis
4
9
2  Issue 5: February 2015
National Amyloidosis Centre News
Highlights of Recent NAC Publications
New AL guidelines
In October 2014 The British Journal of Haematology
published new guidelines on the diagnosis, investigation
and management of AL amyloidosis. The new guidelines
were compiled by the National Amyloidosis Centre
consultants together with senior haematologists from a
number of hospitals around the UK. The authors
reviewed clinical trials and other publications in the
medical literature between 1975 and May 2014 and
abstracts from international amyloidosis meetings held
between 1998 and 2014. The draft guideline was then
reviewed by around 50 UK haematologists and their
comments were incorporated where appropriate.
The previous guidelines were published in 2004 and over
the intervening 10 years, treatment of AL amyloidosis
has progressed considerably. The 2014 guidelines are
comprehensive and provide doctors with clear, up to
date guidance on the best way to manage patients with
AL amyloidosis. We hope that doctors throughout the
UK will find the guidelines useful and that patients will
benefit from optimal care.
AL treatment studies
Stem cell transplantation – could it help a
wider variety of patients?
Some patients with AL amyloidosis respond excellently to
autologous stem cell transplant (ASCT), surviving and
enjoying good health for many years, often over a
decade. But old NAC results from a study of patients
who received ASCT between 1994 and 2004 showed that
severe side effects from the treatment were common
and a significant number of patients died soon after ASCT
before they could experience its benefits. This is known
as transplant related mortality (TRM). Patients with
more advanced disease at the time of diagnosis (reduced
function of heart, kidney and other organs) have a
greater risk of TRM than those with good organ function
at diagnosis. Fears of TRM have limited the use of ASCT
for AL amyloidosis in the UK over the last decade.
But a recently published study by the NAC consultants
suggests that, for a number of reasons, ASCT may come
back into favour. Over the years, patient selection
criteria have been greatly refined, so that ASCT is now
only offered to those patients who really stand a good
chance of benefiting. As a consequence, rates of TRM
have dropped dramatically. The researchers looked at
the outcomes of all 90 patients in the NAC database who
underwent ASCT for AL amyloidosis between January
2003 and September 2012. The results were excellent –
most patients were symptom free for at least four years
after ASCT; about two thirds survived over five years and
many survived for up to 10 years. Importantly, TRM was
very low – occurring in only six out of the 90 patients.
The results of this study are very encouraging for a
variety of different patients. They confirm that many
patients with good organ function at the time of
diagnosis stand a very good chance of long term benefit
from ASCT. However, the diagnosis of AL amyloidosis is
often delayed. Only around 15% of patients seen at the
NAC actually have good enough organ function to fit this
category and fulfil the selection criteria for “upfront”
ASCT (“upfront” means the first line of treatment offered
at diagnosis). What about the other 85% of patients?
Around two thirds of the patients in this study had poor
organ function at diagnosis and at this stage did not fit
the selection criteria for ASCT. They received standard
“low dose” chemotherapy at diagnosis, and had a good
initial response, including improvement in organ
function. When their AL amyloidosis later relapsed, they
did fulfil the selection criteria for ASCT, and received it as
second line treatment. Importantly, both those who
received “upfront” ASCT and those who received ASCT as
second line treatment for relapsed disease were
followed for similar periods of time after ASCT – around
four years, and both patient groups did well. Their
survival rates without symptoms were very similar.
These results offer hope of good outcomes not just to
patients who are diagnosed early with low risk disease,
but also to some patients who are high risk at diagnosis.
The low dose chemotherapy regimes that we
recommend at the NAC are being refined and improved
all the time, leading to better response and survival rates
with the years. So if high risk patients can be treated
initially with low dose chemotherapy and attain sufficient
improvement in organ function, ASCT may subsequently
provide very real long term benefits.
National Amyloidosis Centre News
Lenalidomide-dexamethasone: good for
relapsed/refractory AL amyloidosis;
unexpectedly good for the kidney
Sometimes AL amyloidosis does not respond to the first
chemotherapy regime. This is known as refractory
disease. Sometimes there is an early response but later
the disease returns. This is known as relapsed disease.
The NAC doctors recently published a report on the
outcomes of lenalidomide-dexamethasone treatment in
84 patients with relapsed or refractory AL amyloidosis.
Some patients had relapsed more than once and
experienced more than one change in chemotherapy
regime. The results were good - nearly two thirds of
patients had a haematological response (drop in free
light chain concentration), many experienced improved
organ function and overall survival rates were good. In
some patients, long term kidney responses were
unexpectedly good, better than those reported with
other chemotherapy regimes.
It is possible that
lenalidomide may modulate cellular functions that
contribute to clearance of amyloid deposits from the
kidneys.
AGel amyloidosis study
Hereditary gelsolin (AGel) amyloidosis is also known as
Finnish type (FAF) amyloidosis because it was originally
described in Finland in 1969. Since then, cases have
been reported all round the world. Doctors from the
NAC and scientists from the Wolfson Drug Discovery Unit
recently published the first large series of UK patients
with this condition. The 10 patients described have been
followed at the NAC since 1996. Their disease mainly
affected the nerves and the kidneys, with symptoms
starting in middle age and most being referred to the
NAC around seven years after first becoming ill.
Although it is rare, the authors of the paper
recommended that AGel amyloidosis should be
considered in patients with amyloid deposits in the
kidneys in whom standard immunohistochemistry typing
tests do not give a clear diagnosis. The patients in this
series overall had a good prognosis, living with the
condition for up to 15 years after referral, indicating that
this type of amyloidosis progresses slowly.
Issue 5: February 2015  3
MRI of the heart helps predict
survival in AL amyloidosis
Cardiac MRI has become more and more useful in
evaluating patients with amyloidosis, thanks to the
combined efforts of the NAC doctors and colleagues at
centres such as the London Heart Hospital and the
Oxford Centre for Clinical Magnetic Resonance Research.
Blood tests called serum biomarkers (NT-proBNP and
Troponin T) form the basis of current staging systems for
assessing the prognosis of patients with AL amyloidosis.
But these tests are far from perfect because the results
may be unreliable if there are problems with kidney
function. Such problems are very common, occurring in
a quarter of all patients with AL amyloidosis. Several
factors can also limit the usefulness of ECG and
echocardiography findings in predicting patient
outcomes. A recently published study holds out hope
that newly developed cardiac MRI techniques may be the
way forward in filling this gap.
Previous NAC research showed that cardiac MRI findings
can detect early heart disease in AL amyloidosis and
assess the size of amyloid deposits. The recent study was
the largest yet of its type, including 100 patients with AL
amyloidosis and 54 healthy control subjects for
comparison. The new MRI technique, called T1 mapping,
was shown to have ‘real-world’ clinical significance as a
predictor of outcome in AL amyloidosis, over and above
the value of existing clinical parameters for patient
assessment.
Establishment of an MRI suite at the NAC will allow
further exciting advances and refinements of MRI
techniques, and more patients will be able to benefit
from scanning.
Cardiac MRI images of the heart, before and after administration of
contrast material
National Amyloidosis Centre News
4  Issue 5: February 2015
Fundraising News
Land’s End to John O’Groats:
Nearly £100,000 and a thousand mile long
ribbon of awareness
On the 6 July 2014 a team of staff and patients from the UK National
Amyloidosis Centre (NAC), led by John Plant (patient), Thirusha Lane (Lead
Nurse) and David Hutt (Lead Nuclear Medicine Technician), started cycling
from Land’s End to help raise funds towards the purchase of an MRI scanner.
Fourteen days later, Thirusha and David arrived in John O’Groats having
covered 977 miles and climbed 50,300 feet (almost twice the height of
Mount Everest). Unfortunately John had to drop out due to ill health. But
all the way along the ride, NAC patients and their relatives joined in. Some
rode together with the team for part of the way, some hosted and fed them
and others helped with publicity and fundraising along the way. Thirusha
and David kept a blog at http://amyloidosismri.blogspot.co.uk/ that charted
the highs and lows, the trials, tribulations and jubilations that they
experienced during the ride. The blog includes photos of stunning scenery
that they passed as well as sometimes chilling descriptions of the wind, rain,
hills and sore muscles.
Highlights from the Blog
(a selection of Thirusha’s thoughts and John’s commentary)
Day 1: A perfect cycling
day - dry, sunny, warm,
with a tail wind. We left
Land's End at 09:00 and
cycled via Penzance,
Marazion, Leedstown,
and St Austell to Fowey.
Total distance was 72
miles with around 5600
feet of climbing. A hard
day.
Day 2: Day 2 is perhaps the hardest day of the tour.
Starting at Fowey we crossed the river by ferry to hit the
first of many tough climbs. The Plym Valley Trail was a
delight - an old railway properly surfaced with an
illuminated tunnel. Using it we gained height steadily to
reach Yelverton, a coffee stop, Dartmoor, and the first of
many ponies. Dartmoor National Park included ~20
bleak miles and ~2 hellish and soul-destroying hours of
relentless hills and terrifying descents as we crawled
through Dartmoor in the depressing greyness and
wetness. Thirusha wrote that by the time she got to
Moretonhampstead she was soaking wet, freezing cold,
had numb feet, and pins and needles in both hands.
Day 3: Day 3 began with a harsh 128 metre sharp climb
out of Moretonhampstead, followed by another longer,
sharper climb shortly after. Thirusha’s legs felt like lead!
However, the team was complete today with David
joining, and so spirits were up. While riding through
Exeter, John unfortunately became ill and had to pull out
of the ride. He continued to keep in close contact with
Thirusha and David and helped them to keep the blog
updated as he recovered.
Day 4: Another day of glorious sunshine! Riding over
the Severn Bridge was great, and descending into
Monmouth was beautiful. Coming out of Wells was the
challenge of the day - it was one of those hills that was so
National Amyloidosis Centre News
mean and nasty because it gave you a false sense of
completion as you reached a little plateau, but then as
you turned the corner there was EVEN MORE hill, and
with a steeper gradient. A tea and cake stop at the lovely
coffee shop at the Tintern Abbey Ruins was essential!
Day 5: Another day of lovely sunshine as we left Wales
and returned to England. Herefordshire is a beautiful
farming county and we really enjoyed the views. It
reminded us of Tamworth in New South Wales, Australia,
where David’s parents live. There were quite a few
'cheeky' hills this afternoon, so it wasn’t an 'easy' ride
but Thirusha certainly felt it was the easiest day so far.
That was probably due to a combination of factors - great
company, glorious weather, beautiful scenery, quiet
country roads, lower mileage, fewer nasty hills ... and
dare I say it ... stronger legs??
Day 6: This day comes as a shock after the short and
wonderfully scenic day from Monmouth to Clun. It is on
this day that the riders meet 80+ miles for the first time.
Navigation is difficult and traffic volume can be high.
Having cycled more than 80 miles before, Thirusha
wasn't expecting today to be tough, but it was. In the
sweltering heat, the 44 miles after lunch seemed to loom
endlessly, and motivation ebbed. Today everyone really
struggled with the heat. Not even stopping for photos
we ploughed through to try to get to our destination as
soon as possible.
Day 7: Runcorn to Conder Green: 70 miles, elevation
gain 3300 feet. Difficulty: hard (this is debatable!) A lot
of today's ride was through busy built-up areas, requiring
concentration and at times tricky navigation. Pleasant
weather and pleasant scenery followed in the afternoon.
Day 8: Conder Green to Keswick: 60 miles, elevation gain
3600 feet. Difficulty: moderate. We stopped at Staveley
for lunch and were met by the Staveley Festival in full
swing with parades, costumes, drum bands, bunting,
people on stilts. After that we headed off towards
Kendal. Beautiful scenery followed and we could hardly
complain about the hilly terrain. The ride along the lake
at Thirlmere is one of the best parts of the ride.
Day 9: A momentous day: Scotland is reached at last!
Keswick to Moffat: 73 miles, elevation gain 3000 feet.
Difficulty: hard (yep!). Scotland welcomed us with four
hours worth of rain, strong winds and hideous road
surfaces, making for a pretty miserable afternoon's
riding.
Day 10: Moffat to Loch Lomond (Balloch): 79 miles,
elevation gain 2900 feet. Difficulty: hard. This is a long
Issue 5: February 2015  5
day with rough road surfaces that create terrible
vibration for the rider. Hands tingle and teeth rattle
incessantly, making life hard. Glasgow is complex
navigationally. The ride from Moffat to Glasgow was
excruciating. On such road surfaces not only does your
bottom take a beating, your entire body does, as the
impact of every vibration goes through you. Thirusha
wrote that at one point her hands, wrists and elbows
were so sore she almost let go of the handle bars.
Day 11: Loch Lomond (Balloch) to Glencoe. 69 miles,
elevation gain 3100 feet. Difficulty: moderate (no, this
was HARD). Today was tough. It didn't just rain - it
poured and pelted - and another 'p' word - down on us.
The gusty wind tried its hardest to push us off our bikes.
The ride out of Balloch along Loch Lomond is meant to be
one of the most scenic of the entire two weeks, however,
we could see little more than rain and cloud for the first
one and a half hours. Thirusha wrote that coming over
the Pass of Glencoe she had a moment of pure awe and
joy that almost brought tears to her eyes. That moment
was totally worth the five preceding hours of torture.
Day 12: Spectacularly beautiful scenery dominated the
day today as we cycled along Loch Linnhe, Loch Lochy
and Loch Oich and eventually Loch Ness. Only two days
left now and the prevailing feeling is one of tiredness.
Day 13: Inverness to Altnaharra: 73 miles. Difficulty:
moderate. What a lovely penultimate day. A few hills
but nothing too awful. Great weather. BREATHTAKING
highland scenery as we followed Loch Shin and then
cycled through woods and high moorland to the Crask
and then on to Altnaharra. Every day that we have
cycled through Scotland has surpassed the previous for
spectacular scenery, and today was no different.
Day 14: Altnaharra to John O'Groats: 75 miles, elevation
gain: 3980 feet. Difficulty: HARD!!
They made it! At the
end of a long day, much
of which was into
headwinds, the amazing
duo
reached
John
O’Groats
and
still
managed
a
smile.
Perhaps helped by a
glass or two of bubbly!
6  Issue 5: February 2015
National Amyloidosis Centre News
Amazingly, the challenge has so far raised nearly £100,000 and promoted awareness about amyloidosis along the way.
We’ve included some local newspaper coverage of the ride on the following three pages of the newsletter. Thanks to the
bespoke cycling shirts designed by John Plant, countless people along the route asked the team about amyloidosis.
Brigid Press, a BBC Tees radio presenter who herself has amyloidosis, interviewed Lisa Garlick about the ride on the BBC
Tees Sunday morning programme. Lisa is a patient whose relatives rode with the team in the Lake District and the radio
interview enabled her to help spread the word about amyloidosis to a wider audience. Also included are some photos of
patients, families and friends who came to meet the riders along the way. Some showed their support by riding along for
part of the way, while others provided much appreciated food, drink and most importantly, moral support that
encouraged Thirusha and David whenever things were tough. Often a friendly face appeared at a particularly hard part of
a day which lifted them more than you can imagine. Amyloidosis and the related rare and ultra-rare periodic fever
syndromes can be isolating for sufferers and their families due to their rareness. Another lovely thing emerging from this
ride is that patients got to meet each other and therefore, hopefully, took something important and special away. David
and Thirusha ended many days in awe of the dedication of patients and their friends and relatives to this cause, and felt
humbled by the overwhelming support they received.
National Amyloidosis Centre News
Issue 5: February 2015  7
Bunting and “buns” at the Vicary’s
Graham Pugh
Team Garlick – Daz & Andy
National Amyloidosis Centre News
8  Issue 5: February 2015
Margaret Rogerson & Family
Louise Ray and the narrowest
hotel in the world
Mark McConway, Gail Hogg &
George Turner
Anne & Cathy Smart
National Amyloidosis Centre News
Issue 5: February 2015  9
Martin’s Tour de Force
Dedicated fundraiser overshoots £20,000 target!
By Pat Pinchin
When Cheryl Bolton-Smith was diagnosed with AL
amyloidosis in 2011, her husband Martin set himself a
target of raising £20,000 for the National Amyloidosis
Centre UCL Amyloidosis
Research Fund, known
as the ARF. Since then
he has organised and
taken part in three
years of charity events.
In addition to the West
Sussex barbeque and
the London to Brighton
cycle ride described in
the reports on this
page, he has promoted
several social events, completed other cycle rides, clay
pigeon shoots, run the Barnes Green half marathon, the
Brighton marathon and swum the distance of the
channel in 12 weeks in Horsham pool.
By day Martin is a London cabbie and for the past three
years has organised a cabbies’ collection at Heathrow
airport. He is very grateful to his colleagues who have
donated about £3,000 to the Amyloidosis Research
Fund. Martin is the first to say that none of this would
have been possible without the help and support of
local businesses and a band of volunteer helpers.
Martin has exceeded his target by raising around
£23,000, a significant achievement which has also
helped to raise much needed awareness of the disease
and inspired others from the NAC community to engage
in fundraising too. His two most recent achievements
were a summer barbeque that raised over £4,000 in
one afternoon and completing the Doitforcharity
London to Brighton cycle ride in September.
Bangers and burgers in West Sussex raises
£4,347 for amyloidosis
The glorious June weather on the 21st provided the
perfect afternoon for just over 100 paying guests who
were all only too pleased to have bought BBQ tickets in
support of the research at The National Amyloidosis
Centre. The venue for the BBQ was the garden of The
Dragon Inn, Colgate, West Sussex.
Martin was full of praise for the great help - especially
with the delicious food - he received from Landlord and
Landlady Robin and Nikki.
The continuing support of
Martin and Cheryl’s family
and friends for amyloidosis
fundraising events was, as
always, remarkable in
ensuring that so many
volunteered to help with
all the jobs from erecting
“amyloidosis awareness”
signs, to clearing away
rubbish. So many people
contributed willingly to the
success of a very enjoyable
afternoon.
Martin, (also known locally as “The pest with the raffle
book”), has the wizardry to wheedle raffle prizes out of
local businesses, friends and family alike, all of them
generous in their unstinting support of the
extraordinary charity work Martin does for amyloidosis.
Having bought raffle tickets, many returned home very
pleased with their winnings.
A courageous Cheryl was able to enjoy part of the
afternoon despite suffering with amyloidosis symptoms
affecting multiple organs. After the BBQ she said, “It
was my best day out in ages. I wanted it to go on for
ever”. All present gave Cheryl their heartfelt good
wishes for the success of the new treatments on the
horizon.
The BBQ which raised £4,347 for the Amyloidosis
Research Fund is the type of “easy fundraising event”
Martin hopes “will inspire others to organise for
amyloidosis”.
10  Issue 5: February 2015
After the BBQ, Martin busied himself getting fit for his
biggest charity event this year - the London to Brighton
cycle ride on September 7th.
Family duo conquer Ditchling Beacon in aid
of amyloidosis research
“Everything went so well” was Martin Bolton-Smith’s
verdict at the end of the Doitforcharity London to
Brighton cycle ride on September 7th. He had chosen
this event in aid of the UCL Amyloidosis Research Fund
as a family fundraising challenge. Cheryl’s cousin
Jodey-Marie Wilson and her husband Barry wanted to
join Martin in supporting the Fund and they raised £570
through JustGiving. Their daughter Abbie, aged 6, even
made a special amyloidosis awareness bracelet for the
occasion. Martin and Jodey joined 3,000 competitors
riding for various charities and Barry provided support
in the back up vehicle. The organisers expected
participants to raise over 1 million pounds for various
charities.
National Amyloidosis Centre News
many other competitors decided to take it easy and
walk the steepest section.
Summing up three years of giving
Before Cheryl’s illness Martin was more of a sports
spectator than a participant so the sporting events
were a personal challenge. The shock of Cheryl’s
diagnosis with a rare, incurable disease persuaded
Martin that he had to actively try and help her fight her
cruel illness by doing something positive himself to
support the work of doctors and scientists at the NAC.
They held the key to finding better treatment for
sufferers so support for their work was crucial. It
became clear to Martin that rare diseases often
struggle for funding from medical grants and do not
receive large charitable donations in the way that
professional health charities do. Martin proved to
himself that the challenges of fitness training for the
various sporting events, painful as some of them were,
did not compare with Cheryl’s suffering. He also
derived much pleasure and satisfaction from both the
activities and his efforts to add to the Amyloidosis
Research Fund.
Professor Sir Mark Pepys summed up the significance of
Martin’s charity work for the Amyloidosis Research
Fund with these words:
“The Amyloidosis Research Fund plays an invaluable
role by enabling us to move swiftly to seize whatever
opportunities arise, whether it is to purchase an
essential piece of equipment or a special chemical or
other reagents for experiments, or to obtain specialist
expertise or services, or employ a new person to do a
specific and necessary job in the laboratory or the clinic.
“We started as a team, rode as a team and finished as a
team”, said Martin after the event. They had got up at
3.00 am on the morning of the event to drive to
Clapham Common for the early start. It was a lovely
September day for the 54 mile ride across the beautiful
Sussex countryside and challenging South Downs.
Martin had bought himself a new bike several months
before the event. Cycling a distance event needed
several months of training to build up fitness and
endurance. A particular challenge was Ditchling Beacon
(elevation 248 metres), notorious for losing riders from
the professional pelotons in the UK stage of The Tour
de France and also in the Tour of Britain. Martin was
delighted to have ridden all the way, though Jodey, like
I cannot overemphasise the importance of having this
priceless flexibility. It has contributed on a daily basis to
all the progress we have made, which is reflected by our
many high impact publications, our new inventions and
patents, our uniquely strong relationships with GSK,
representing the pharmaceutical industry without which
there would be no drugs, our many high value research
grants from the MRC, the Welcome Trust and other
bodies, and, of course, our entirely NHS-funded clinical
service which exists to care for the patients who are at
the heart of everything we do. Every single person who
has donated to the Fund and every individual who has
helped to stimulate and organise these donations
should be very proud of what they have done”.
National Amyloidosis Centre News
With ground breaking treatments for amyloidosis on
the horizon, Martin feels that there are no words that
speak louder and more powerfully than those of
Professor Sir Mark. They make every arduous training
session and even his desperate crab crawl over the line
at the end of the Brighton Marathon worthwhile.
Issue 5: February 2015  11
The London to Brighton cycle ride was Martin’s last
fundraising challenge for the time being.
After
organising and taking part in three years of charity
events, he has decided to take a well-earned break. But
there are many who are saying that for a man like
Martin, “he’ll be back”!
Pattie Wilson’s 28 mile walk
in aid of amyloidosis research
Inspired by notices on the wall in the NAC waiting room
about fundraising, I felt that I needed to do something.
We need a CURE FOR AMYLOIDOSIS. It is really helpful
to do positive things as one feels so
helpless when you are with someone
you love who you see suffering with
all sorts of symptoms.
My husband John has been under the
care of the NAC for about 10 years.
Before that it took two years of
visiting many consultants before he
was
diagnosed
with
ATTR
amyloidosis. He then had to take
early retirement from the judiciary.
I decided that walking was something
I could do. Despite being nearly 70
years old I was determined that my
fundraising activity would not just be
“a walk in the park”! We have local
Shepherds’ Walks organised as
challenges, so that is what I opted for
- a 28 mile walk within 12 hours from Carter Bar to
Yetholm in the Scotland/England border country.
How naïve I was! Hill after hill, they all felt like the
Matterhorn! The weather was terrible and there was
rough terrain all the way. Fortunately my daughter
Olivia and her husband Tom decided to join me. I think
they knew what was in store and decided to be there to
pick up the pieces! Early on Tom
took my heavy rucksack, full of
water and snacks, and carried it
with his own the whole way.
What a complete star! I could
not have completed the day
without them. Such team spirit.
We arrived at Yetholm at
9.20 pm wet, hurting, crawling
and crying tears of joy at
completing such a gruelling
challenge.
The generosity of friends, family,
colleagues and strangers has
been overwhelming. My target
was to raise £5,000 and to date
my JustGiving page has raised
£7,710 plus over £1,000 in gift
aid! Hopefully more individuals are now becoming
aware of this dreadful disease. Let’s hope we can raise
the profile to keep raising money for more research. I
now have to think of a new challenge, perhaps
something less physical!
National Amyloidosis Centre News
12  Issue 5: February 2015
Donations
To ensure that your donations go directly and exclusively to the NAC,
please send directly to us or contact Beth Jones on 020 7433 2802 or beth.jones@ucl.ac.uk.
All university based medical research depends on funds
that are fought for in open competition (grants) from the
Government-funded Medical Research Council and other
charitable bodies. Their renewal depends on a successful
research programme and the NAC has an excellent track
record in this respect. However, there are constant
shortfalls and every penny from other sources is received
with sincere gratitude, and is used specifically and in its
entirety for amyloidosis research. You can make an online
donation at:
http://www.ucl.ac.uk/amyloidosis/support-us
or make a donation by post. Gift aid forms are available
online or from:
Beth Jones
National Amyloidosis Centre
Division of Medicine, Royal Free Campus
University College London
Rowland Hill Street
London NW3 2PF UK
UCL Medical School is part of University College London
(UCL) which is a registered charity and qualifies for the
Gift Aid Scheme. This increases the amount of the gift by
25% without any extra cost to the donor. It does so by
allowing UCL to claim back the basic rate tax paid by the
donor. To qualify for Gift Aid the donor must be a UK
taxpayer and his/her combined income and capital gains
tax bill must equal or exceed the amount UCL claims
back on the gift. The gift can be for any amount and
applies to one-off gifts and regular gifts made over a
number of years. For UCL to claim the tax benefits the
donor must make a "Gift Aid Declaration". One
declaration will cover all future gifts and may be
cancelled at any time. Cheques should be drawn in
favour of "UCL Development Fund". This money is then
transferred to the Amyloidosis Research Fund together
with the reclaimed tax. If a donor does not qualify for
the Gift Aid Scheme or does not wish to contribute in
this way, cheques should be made payable to: "UCL
Amyloidosis Research Fund".
 Newsletter funded by a bequest from Laura Lock 