MEET SOME OF OUR FUNDRAISERS
Prof Sir Mark Pepys, Neil Rudram and
Prof Philip Hawkins
Martin Bolton-Smith
Martin’s wife Cheryl was diagnosed with AL amyloidosis in 2011. Soon after
Cheryl’s diagnosis, Martin decided that he would do something positive
towards helping research into the disease and so far has organised or
participated in many events and raised over £17,500 for the UCL
Amyloidosis Research Fund. He also feels it is crucial to raise public
awareness of the disease. Some of his events include the Barnes Green Half
Marathon and the Brighton Marathon. He has organised a golf day and a
bowls challenge and events at his local pub. Martin is a London cabbie and
he has also made collections from his workmates at Heathrow airport.
http://www.justgiving.com/Martin-Bolton-Smith2
Jo was diagnosed with AL amyloidosis in 2012. This came as quite a blow
and she and her husband needed something positive to focus on. They
decided to raise money for a much needed piece of laboratory equipment
called a coverslipper machine. With the help of relatives, friends and
colleagues undertaking mountain climbing challenges, hosting tea parties
and, more recently, a gruelling bike ride from London to Paris (see above),
they have so far raised £12,500 of the £23,000 target.
http://www.justgiving.com/Joanna-Jerden-CoverSlipperFund
Joanna Jerden
The “Walking Goochies” with former
England captain, Michael Vaughan
(Graham Bell, Kevin Poore, Grahame
Blakey, Nic Hussey, Mark Challinor)
In August 2013, Grahame, Nic, Kevin, Graham and Mark came together to
raise funds in memory of their dear, cricket loving friend, Steve Baldwin,
who sadly died from amyloidosis at the age of 44. Wanting to do something
unique, they came up with the idea of “walking Graham Gooch’s test
career” (Steve’s favourite player). Taking Gooch’s 8,900 runs, multiplying by
22 (each run is 22 yards long), gives an overall walking distance of 195,800
yards, or 111 miles. Dressed in pristine cricket whites and sporting
trademark Gooch moustaches, the team started their walk from Edgbaston
in Birmingham, and one week later arrived at The Oval in London, ready for
the first day of the 5th Ashes test match. So far they have raised almost
£6,500 for the UCL Amyloidosis Research Fund and the Lords Taverners.
http://www.justgiving.com/teams/soapys
Chloe Bullock
Chloe’s Mum Pat has had amyloidosis since 2003. Chloe raised £1,3275 in
The London Run in 2010 and has now organised an ongoing fundraiser for
the UCL Amyloidosis Research Fund. She writes poems for special occasions,
weddings, christenings, birthdays, retirements, farewell parties, Valentines’
Day, Mothering Sunday, funerals, memorial services, or anything else you
like. Her poems will bring a tear to your eye or make you smile. She can also
provide poems for use by organisations and causes for marketing purposes.
She writes the poems in exchange for a donation to the Research Fund
through http://www.justgiving.com/bespokepoemsamyloidosis. For more details
email Chloe at: hellobespokepoems@gmail.com. If you have a Facebook
account type “bespoke poems in aid of amyloidosis” into the search bar.
When you reach the page, click on “about” and you will find samples,
reviews and full details of how to make a request. Chloe’s says “she is
determined to continue fundraising for the doctors and researchers at the
NAC who are at the forefront of research to discover new treatments to
improve the lives of sufferers”.
Father and son duo, Patrick and Miles Pinchin, decided to ride the 70 hilly
miles of the extreme cycling event, the North Cornwall Tor in April 2011 to
raise money for amyloidosis. Patrick’s wife Pat, who is Mum to Miles, suffers
from the disease. According to the Met Office, it was the windiest and
wettest day of the year! Patrick and Miles were among the 367 of the 1000
entrants who started. In spite of well insulated, warm, waterproof clothing,
the temperatures of 5 degrees across Bodmin Moor, felt more like below
freezing! Father and son duo characteristically rose to the challenge and
finished comfortably in the bronze medal category. With tired legs and
soggy clothing, they raised £1,335 for amyloidosis research.
Miles & Patrick Pinchin
Sky’s Nanny Helen was diagnosed with AL amyloidosis in October 2013. It
took a long time to get a diagnosis with many hospital visits. When Sky was
told what was wrong and that it was a rare illness that not many people have
heard of, she decided to try and raise some funds to “find a cure for Nanny”.
In February 2014 Sky shaved her beautiful long blonde hair off and raised
over £1,200! Her family and friends are very proud of her as it was such a
wonderful thing to do, especially for a 9 year old!
Sky Chattenton with her Nanny, Helen
Chris Howarth
Chris was diagnosed with amyloidosis in 2012. He underwent six months of
chemotherapy which was very tough but is somewhat better now, largely
because he was diagnosed early. His son Stuart needed something positive
to focus on, so he decided to raise awareness of the disease and, at the same
time, raise money towards the research at NAC. He’d never done much
running before so saw the Manchester 10K Run as a challenge. Following
this, he and a work colleague ran again in 2013. In both runs sponsors were
asked to choose eye-catching outfits for Stuart and his colleague to wear in
the hope that this would draw more attention to amyloidosis (see above).
He also organised a “bake-off” at work and, so far, has raised around £2,000
for the UCL Amyloidosis Research Fund.
David Rudram
Mal Glass
David was diagnosed with AL amyloidosis and sadly died due to multiple
organ failure as a result of this devastating, progressive and usually fatal
disease. His family felt as a tribute to David’s courage and to raise the
profile of this comparatively rare condition, it would be good to raise funds
to improve early diagnosis and more effective treatments. As a result,
David’s younger brother Jack and his wife Carol, walked from Melrose in the
Scottish Borders, close to where David had retired, to Lindisfarne. His
daughter Alison ran the Cardiff half marathon and his son Christopher has
been running in races in Victoria on Vancouver Island, where he has
emigrated. David’s youngest brother Neil set himself a challenge to cycle
from Somerset, where David spent his teenage years, to all the addresses
David had lived, worked or attended University, including a coast to coast
section (Newcastle to Irvine), and finishing in the Scottish Borders where
David spent his far too short retirement. He completed 1000 miles in total.
Neil called in at The Royal Free Hospital en-route and met Sir Mark Pepys
and Professor Philip Hawkins (see above). Including donations at David’s
funeral the Rudrams have raised in excess of £5,000.
Mal’s wife Janice was diagnosed with AL amyloidosis in 2008 after many
months of tests. Janice first became aware of a shortness in breath during a
walk whilst on holiday for their 30th wedding anniversary. Mal was inspired
to start raising vital funds for equipment during a routine visit to the NAC,
where people such as Martin and Jo were already fundraising. Mal
completed a Durham dales challenge walk in September (30 miles in 10
hours). This was his first fundraising event but Mal, who is an accountant in
the NHS, is retiring in January and hopes to devote more time to raising
funds for such a life changing-disease, and to spending more time with
Janice.
John’s family has a history of AFib amyloidosis. His mother Rosemary died
of renal failure in 2011 and John is also affected. He has taken part in a
recent drugs trial. John has recently produced calendars to raise funds for
the UCL Amyloidosis Research Fund. A keen cyclist John, and some of the
staff from The National Amyloidosis Centre, will be riding from Lands End to
John O’Groats in July 2014 to raise funds and, importantly, awareness of the
disease. The team hope to meet patients and their friends and family along
the way.
http://rideonforamyloidosis.blogspot.co.uk/
John Plant
Alex & Paul Smith
The Smith family from the Scottish Highlands, were so devastated by the
death of father and grandfather, Kenneth Rudkin, from amyloidosis in
January 2013, they set about organising a charity event to raise money for
the UCL Amyloidosis Research Fund. Kenneth had been unwell for about 10
years with symptoms of the disease that had mystified his doctors. Sadly
the diagnosis by the NAC in November 2012 was too late for Kenneth.
Granddaughter Alex (18) and her Dad Paul organised a sky-dive in Kenneth’s
memory, raising £600 for the UCL Amyloidosis Research Fund. The father
and daughter duo jumped 10,000 feet in tandem from an aeroplane at
St Andrews in Glenrothes. After the event, Alex said: “I’ve always wanted to
do a sky-dive, so I did so by raising awareness and money for amyloidosis in
memory of my Grandad”.
Michelle Wall & family
Michelle is 31, married to David and they have three young children.
Michelle’s mum was diagnosed with AL Amyloidosis in 2011 which shook the
whole family, having never heard of the illness before or how serious it was.
When not chasing after three small children, Michelle works as a freelance
artist, running Wallflower Designs. Unable to keep up with her Dad’s valiant
fitness-focussed fundraising efforts, Michelle decided to help raise money
through her art instead. She organised an online art raffle, via her
Wallflower Designs Facebook page, to win a limited edition print of her
newly retired artwork “No matter the road ahead, you are not alone”, and
has donated a framed print to the National Amyloidosis Centre as well as 5%
of future artwork sales. She is grateful to the NAC for all they have done for
her mum and their part in helping her fight this disease to see her
grandchildren grow up. Michelle hopes with extra funding for further
research, a cure will soon be found.