Q3 2011 Newsletter

3rd Quarter 2011
NEWSLETTER
Issue 34
Jo’s blog
Dear all,
So here we are; another packed newsletter and we’re all
wondering where the last 3 months have gone again!
I came across this quote the other day which struck a chord:
“Life can only be understood backwards;
but must be lived forwards.” (Søren Kierkegaard)
Certainly many of those, including me, who volunteer and/or
fundraise for AMEND have been through a lot in the past, some
of which was hard to comprehend at the time, but as we move
forwards with AMEND, learning about our disease and meeting
new people, we often surprise ourselves with new-found skills
and experiences and can even begin to understand previous difficult ones. This theme runs strongly through this quarter’s newsletter. Life is definitely for living forwards!
Thank you to all those who pitch in, to our fundraising supporters, and a big welcome to all our new members, far and wide!
Enjoy the newsletter, be good and take care!
Jo
contents
page
2
3-4
5
6
7
8-10
11-12
13-15
16
roadshow news
events (including 2012 AGM Day plans)
UK news
USA news
medical advisory team news
My Story (MEN1) & members’ news
special report (Mukuroji-no-kai)
fundraising news
contact page
© Association for Multiple Endocrine Neoplasia Disorders
Registered UK Charity No. 1099796
roadshow news
South West
2011 UK Roadshow Update
Janet and Marion (ably transported by Mike
Pidgeon – thank you Mike!) hosted the South
West meeting on 25th June at the Tom Mogg
Inn in the tiny village of Burtle, Somerset in the
middle of the Somerset Levels. Grateful
thanks to Dr Karin Bradley from Bristol Royal
Infirmary who joined the group for what proved
to be a very lively question and answer session. Unusually, the 2a patients out-numbered
anyone else.
Janet
The Roadshow Project continues apace.
Huge thanks go to Janet who has been the
primary organiser of all the meetings as
well as the host on most occasions. Grateful thanks also to all our medical volunteers
for giving up their Saturdays or Sundays to
come and answer all those queries that
bug us between hospital appointments.
NB: If you book a place but find you can’t
attend, please let Janet or Jo know as soon
as possible to avoid unnecessary expense,
particularly with regard to catering. Thanks!
Some of the SW attendees
Northern
Here’s an update of meetings held since
the last newsletter:
Dundee
Gill and I travelled north from our respective
homes to meet our small but nevertheless keen
Scottish group of attendees who were delighted
to have this opportunity to meet other patients.
Professor Alasdair Mackie from Ninewells Hospital in Dundee kindly gave up his afternoon on
Saturday 11th June to informally answer any
questions the group had. It was lovely to meet
everyone, albeit in a rather strange hotel room
venue! The weather and the scenery were
stunningly beautiful on my long train ride home.
Jo
Janet and Gill hosted the meeting when we
once again returned to The Rising Sun Pub in
Castleford. Former Trustee and long time supporter of AMEND, Dr Stephen Gilbey from
Leeds kindly attended to answer any questions
and Dr Mushtaq Ahmed, Principal Genetic
Counsellor at Chapel Allerton Hospital in Leeds
spoke about his research on genetic counseling
experiences for children.
Janet
Here’s a list of the upcoming remaining
meetings for 2011. Hope to see you there!
Midlands
Sunday 4th September
East Anglia
Saturday 1st October
New York City, USA (not Lottery Funded)
Sunday 23rd October (see page 4)
South East
Saturday 12 November
Please get in touch if you would like to
attend any of the above meetings.
Captain Cook’s ship, The Discovery
2
events
dancing. We’re sure there’ll be something in our
auction that will take your fancy too!
2012 AGM & Information Day
Saturday 19th May 2012
Draycote Hotel, Warwickshire, UK
Charity Golf Tournament
Come and join us from 9:30am to 4:30pm for this
popular and fascinating day. Listen to world-class
medical expert speakers and meet other patients and
AMEND volunteers. Patients (both members and
non-members), their families, friends and interested
health professionals are all welcome.
•
•
•
•
•
Advances in treatment for MEN1
Professor Rajesh Thakker, Oxford
Advances in treatment for MEN2 & MTC
International speaker (tbc)
Message from AMEND’s Founder
Liz Dent
Free lunch and refreshments
…..and much more
Sunday 20th May 2012
Warwickshire, UK
No matter what your handicap,
you can swing your clubs with us
on the 18-hold Whitefields Golf
Course (adjacent to the Draycote
Hotel). A driving range and pitch
and put course are also available.
Entry is just £25pp (includes £5 donation to
AMEND) and there will be prizes and wooden
spoons galore!
Ladies Spa Day
2012 is AMEND’s 10th Birthday so
we have organised extra events
this year over the course of the
weekend in celebration.
Sunday 20th May
2012
Draycote Hotel, Warwickshire, UK
Rooms are available at the venue
for the preferential rate of £65 per
room if booked before March, and
we have details of other accommodation in the area.
AMEND’s own yoga and relaxation guru, Marion Pidgeon
has kindly agreed to host a
yoga session for us—stretch
out those dancing legs!
Partners who would rather play golf
during the day get a free round at
the adjacent 18-hole golf course
when booked in advance!
Other beauty treatments will be on offer including
manicures and Indian head massage.
Spoil yourself for just the price of a donation to
AMEND.
Black & Gold Charity Ball
Saturday 19th May 2012
Draycote Hotel, Warwickshire, UK
We do hope you will come and support
AMEND and celebrate our birthday with
us. All those who have come in the past
have reported how pleased they were
that they did.
Come and party the night
away with us in aid of
AMEND. Get a group of
friends, family or colleagues
together for that welldeserved night out!
To reserve places for any or all of the
above activities, please contact Jo and
Janet in the office as soon as possible.
Reasonably priced at just £40
per person, the price includes
welcome drink, a 3-course
meal and a night of
entertainment and
Look forward to seeing you
there!
3
events
parathyroids, adrenal glands and neuroendocrine tumours. As usual AMEND will
also be running parallel sessions including patient experience presentations and
an Ask the Doctor session.
AMEND Roadshow comes to
New York City!
Sunday 23rd October, 2011
Information, Support, Friendship
This is a fantastic opportunity to see how
medical conferences work and we are
always made to feel most welcome.
Following the format of our popular UK
meetings held over the last 3 years,
AMEND will be holding a free MEN patient
meeting in central Manhattan on Sunday
23rd October.
Every year we receive consistently excellent feedback from those who attend and
so we would urge anyone to do so.
Thanks to a travel grant from Genzyme for
Jo to attend the Thyroid Cancer Alliance
AGM in New Jersey the previous day, we
have been able to organise this opportunity
to meet some of our MEN1 and MEN2
members in the US at minimal cost.
Please contact Jo or Janet for details or
keen an eye on our website.
Dr Michael Tuttle, endocrinologist and thyroid cancer expert from Memorial Sloane
Kettering Hospital in New York will be attending as our Ask the Doctor specialist.
AMEND is a member
of the international
Thyroid Cancer Alliance, whose first
ever AGM is to be
held in New Jersey,
USA on Saturday
24th October. Several of the Alliance’s
members are organising special events
during September in order to raise awareness of all types of thyroid cancer, including MTC, with a special awareness day
on September 24th.
Thyroid Cancer Awareness Day!
September 24th
Contact Vickie or Jo for details and to book
your place (space is limited),
•
•
•
•
•
get to know AMEND and its plans
and resources (our new US MEN2a
book will be available to take away)
get to know one another for mutual
support
tell AMEND what we can do for you
informal Ask the Doctor session
free refreshments
The Butterfly Thyroid Cancer Trust is
hosting the UK’s first thyroid cancer
awareness campaign and details can be
found at the special website,
www.neckcheck2011.org.uk.
(image courtesy of BTCT’s campaign materials.)
Jo and Vickie look forward to seeing you
there!
Hammersmith Endocrine MDT
Symposium
Friday 9th December, London, UK
Join AMEND, medical experts and students
at this annual professional educational
event held at the Hammersmith Hospital in
London.
This year’s professional sessions are
wide-ranging covering the pituitary,
4
Details of the Thyroid Cancer Alliance’s
work can be found at http://thyroidcancer-alliance.org/.
UK news
Buckinghamshire GP Dr Andrew Webber has
refused to bow to his PCT’s 28-day prescribing
rule. ‘Checking and signing scripts is a very
significant daily task for GPs,’ he told GP.
‘Rushing the job risks errors. Much of the work
cannot be delegated to non-medical staff. 28day prescribing doubles this workload - forever.
I won’t do it.’
One in three PCTs restricts
prescriptions
By Tom Moberly, 4 July 2011 (GPOnline.com)
One in three PCTs has issued guidance
restricting prescriptions to 28 days' treatment at a time, despite opposition from patients and GPs, an investigation has found.
Professor John Wass, professor of endocrinology at Oxford University, said PCTs are
‘chasing a mythical pot of gold at the end of the
rainbow with this kind of thinking’. Professor
Wass is also chairman of the Addison's Disease Clinical Advisory Panel. He said: 'The
risks to patient safety from restricted access to
essential medication are particularly severe for
steroid-dependent Addison's patients, who
have been know to die less than five days after
running out of their steroid medication.'
Of 104 PCTs that replied to a Freedom of Information request, 32% said they had issued guidance advising GPs to limit prescriptions to 28
days' supply at a time. A further 11% said they
promoted such practice. Such policies aim to
reduce drug wastage and save costs, but just
five PCTs had looked at the impact of their policy on prescribing costs, inconvenience to patients or workload costs for GPs and pharmacists.
GPC prescribing subcommittee chairman Dr Bill
Beeby described such policies as ‘virtually evidence-free’.
Studies show that increases in GP and pharmacy workload outweigh any savings from reduced medicines waste, he said. ‘If you do the
sums, it doesn’t add up.' Dr Beeby added that
increasing the volume of prescriptions being
processed increased the risk of errors occurring
at each stage of the prescription chain.
The British Thyroid Foundation calculates that
thyroid treatment with levothyroxine costs 42%
more for 28-day prescription periods than 82day periods. Dr Brian Karet, Diabetes UK’s
medical advisor for primary care and RCGP
clinical lead for diabetes, said a 28-day limit
was ‘inconvenient for patients and generates
extra work for practices’. ‘As long as you have
compliance issues sorted out, I can’t see the
benefit to anybody,’ he said.
The Patients Association has said such policies
are inconvenient for patients and have
‘unintended consequences that are detrimental
to patients’.
The DoH said there was no government directive to specify prescription length. ‘We recognise that prescriptions for longer periods may
be more appropriate and more convenient for
some patients and we would not expect any
PCT guidance on this to be mandatory,’ a
spokesman told GP.
5
One PCT that has examined the impact of its
policy is NHS Hertfordshire. It introduced its
policy following local audits with GPs and community pharmacists that demonstrated 28-day
prescribing reduced the amount of medicines
returned, unused, to pharmacies for disposal.
The PCT has outlines the reasons for its initiative in a leaflet written for patients.
PCTs with 28-day prescription limits:
One in three PCTs has issued guidance restricting prescriptions to 28 days’ treatment at a
time, despite opposition from patients and GPs.
Of 104 PCTs that replied that replied to a Freedom of Information request, 32 per cent said
they had issued guidance advising GPs to limit
prescriptions to 28 days' supply at a time.
A further 11 per cent said they promoted such
practice.
USA news
US Social Security Disability Impairment List Updated
FDA Approves Trade Name for
Vandetanib
AstraZeneca, August 2nd, 2011
The US Social Security
Disability impairment list
was updated in June 2011
to include endocrine disorders affecting pancreas,
thyroid, parathyroid and
adrenals (part 9) as well
as thyroid cancer separately (part 13).
Check their website for details at
www.socialsecurity.gov/disability/
professionals/bluebook/listingimpairments.htm.
AstraZeneca announced that the US
Food and Drug Administration (FDA) has
approved the trade name Caprelsa for
the recently approved orphan drug
vandetanib, a treatment for medullary thyroid cancer that cannot be removed by
surgery or that has spread to other parts
of the body.
Caprelsa is a kinase inhibitor indicated for
the treatment of symptomatic or progressive medullary thyroid cancer in patients
with unresectable (non-operable) locally
advanced or metastatic disease. The use
of Caprelsa in patients with indolent, asymptomatic or slowly progressing disease
should be carefully considered because
of the treatment-related risks.
Campaign for rare diseases
The FDA approved vandetanib on April 6
2011 and AstraZeneca made the product
available to US patients before it received
a trade name. The product is now available under the trade name Caprelsa.
Federal budget cuts have been proposed
to Medicare reimbursement for drugs and
biologics as part of a compromise to raise
the debt ceiling. One proposal under consideration is to move orphan products from
Medicare Part B coverage to Part D. This
could greatly increase the cost for some
patients and families dependent on lifesaving orphan drugs and biologics.
“We chose to launch the drug as
vandetanib without waiting for a trade
name approval because there were no
other FDA-approved medicines available
for people with this rare type of thyroid
cancer,” said Eric Vogel, Executive Director of Oncology. “AstraZeneca is committed to bringing meaningful medicines to
those who need them most, and Caprelsa
is an important part of that commitment.”
You can quickly and easily submit a message to President Obama and all members
of Congress to let them know you oppose
cuts to Medicare reimbursement that reclassify orphan drugs from Part B to Part
D. It takes just a few minutes. Read
NORD’s basic letter; personalize it with
your message, and submit it on the NORD
website at www.capwiz.com/rarediseases/
issues/alert/?alertid=51645536.
6
AMAT
New Medical Advisor for NZ
We are delighted to welcome Dr Richard
Carroll as our New Zealand representative
on the AMEND Medical Advisory Team
(AMAT). We asked Dr Carroll a few questions:
At which hospital are you based?
I live and work in the beautiful (slightly windy!)
city of Wellington. I am based at Wellington
Hospital in the Endocrinology, Diabetes and
Research Centre but also visit Kenepuru hospital in Porirua and Wairarapa hospital in Masterton.
Where did you do your training?
I have been based in Wellington throughout my
training in New Zealand. I spent 2 years in London, UK and trained at the Hammersmith and
Charing Cross hospitals where I gained significant experience in the management of multiple
endocrine neoplasia, pituitary disease and neuroendocrine tumours. As useful as this was,
the daily tube journey and the lack of decent
coffee anywhere ensured that I would return to
New Zealand! [ah, but what about the tea?! Ed]
Why endocrinology?
Endocrinology remains one of the few truly holistic specialities in modern medicine which affords (and demands) the opportunity to consider more than one organ, disease, drug, etc.
I have always enjoyed the problem solving required in the diagnosis of endocrine conditions,
especially as effective treatments exist for many
of the conditions I manage. I particularly enjoy
working with people with MEN and their families
as the relationships built up over many years of
interaction can be very rewarding. Additionally,
the nature of endocrine practice allows me,
unlike many doctors in other specialities, to
spend plenty of time with my family and young
children and enjoy all that New Zealand has to
offer.
What are your hopes for NZ MEN patients ?
New Zealand is lucky to have many excellent
endocrinologists all of whom may see people
with multiple endocrine neoplasia. Presently,
there are no national guidelines for the
management of these conditions, and
expertise is spread widely. I hope
7
that, through working with people with MEN
and their families, and doctors with an interest
in the area, we can deliver a high standard of
care and management. In a small country like
New Zealand, I think this may be best achieved
through a national approach, and I am an advocate of creating a service enlisting the input of
interested endocrinologists, surgeons, oncologists, etc throughout the major hospitals who
can each provide expert input. MEN remains a
rare condition, but that does not mean that the
provided service for MEN patients and their
families should be anything but excellent. I
also favour strong relationships between MEN
patients and their doctor having seen this
model work very well in London. I have been
involved in patient directed educational sessions, MEN updates, and MEN research and
see an opportunity and a need to establish
these areas in New Zealand.
Can NZ patients help you?
I would be interested to hear from any person
with MEN based in New Zealand to better understand what areas of the current service they
feel could be improved, and to collect ideas
they may have as to any interventions likely to
improve the standard of care of MEN in New
Zealand. I would also be interested in knowing
the likely level of interest in educational and
MEN update meetings for patients, families and
doctors alike so that a suitable (perhaps regular) event could be organised.
We look forward to working with Dr
Carroll, and would be delighted to hear
from any NZ patients who would also
be interested in being involved in
AMEND NZ!
my story
department at the nearby university hospital, suspecting hyperparathyroidism (a
diagnosis that is apparently frequently
missed according to the online research I
indulged in as soon as I got home).
MEN1 by Callum Hackett
At the fresh age of 21, my MEN1 tale is already complicated and drawn out, though I
feel grateful for it having taken place with
speed and precision compared to the
lengthy trials I have heard other patients
endure.
In 2008, when I was
18 and had just
started my first term
of a Medieval-English
degree, I went to see
a GP because of
some persistent, frustrating symptoms that
had pestered me for a
few years, but which I
had ignored. When I
was at college studying for A-levels, I'd
often make a desperate walk home feeling
as though my legs were about to give way,
and would collapse on the sofa after
scrambling for some junk food, which I
knew would quickly set me right.
For two years, my parents and I put these
occurrences down to 'growing pains', which
seemed reasonable at the time, but once
they became more regular, more debilitating, and were accompanied by dizziness
and headaches, I realised that they were
probably a manifestation of something a “My brilliant
little more serious.
GP
immediately
Soon after my initial
appointment, a quick
referred me
blood test showed a
to an
high calcium level
alongside a 'normal' endocrinology
parathyroid hormone department…”
level (which, despite
being in the reference range, was actually
far too high for such soaring levels of
calcium). My brilliant GP immediately
referred me to an endocrinology
8
After a few months of waiting, and an impatient letter to the doctor in charge of the
endocrinology clinic, I was added as an
'extra' to my consultant's list of patients,
meaning I don't have to wait to float to the
top of a waiting list, for the small price of
turning up on time while my consultant
runs an hour late - after having learned of
all the possible complications that could
be brought about by hyperparathyroidism,
I simply didn't want to risk any symptoms
or operations coinciding with important
exams.
I remember that my first appointment was
rather confusing; it seemed clear enough
to me that I had hyperparathyroidism and
that was the end
“...my first
of it, but my consultant didn't
appointment
seem to believe
was rather
that my reported
confusing..”
symptoms fitted
the condition. At
the time, I naively thought that she was
just missing something, but I put up with
the countless blood and urine tests that
ensued, unknowingly accepting a genetics test among them.
Once seventeen months had passed
since my first appointment with a GP, I
was hit with the surprise diagnosis of
MEN1 – a condition I had never heard of
or read about before – as determined by
the genetics test. It turned out that my
earliest symptoms – fatigue and muscle
tremors rectified by eating – were not
brought on by hyperparathyroidism after
all, but rather by a collection of insulinomas on my pancreas, which were confirmed by a 72-hour fast the next week
(thankfully, I only had to last for
my story
60 hours before the tumours were confirmed!).
Naturally, as soon as I was diagnosed with
MEN1, I had a multitude of scans: ultrasounds, CTs, MRIs, a bone-density scan,
as well as blood-glucose monitoring. Despite having no family history of MEN1
(with familial genetics tests eventually
showing that I was the lucky recipient of a
sporadic mutation!), and though I was only
19 at the time of the scans, they determined that I had multiple parathyroid tumours which had already caused weakening of my spine and hips; I had insulinomas
in the body and tail of
my pancreas, as well
“..though I
as non-functioning
tumours in the head; I was only 19 …
I had multiple
had a pituitary microadenoma, which
parathyroid
has recently been
tumours which
confirmed as a
had already
prolactinoma; and,
though it wasn't discaused
covered until the day
weakening of
of my distal pancreatectomy, I also had a my spine and
large, non-functioning
hips.”
adrenal tumour.
It took some time to get used to this information – it still doesn't seem quite real –
but the condition has affected me greatly in
a very short time. By May 2010, I had
reached a point where carrying on with university was no longer an option. Concentration became constantly elusive, leaving me
with the ability to read for just twenty minutes at a time, and I was too tired even after long sleeps to drag myself to lectures or
bother with socialising. So, I took the difficult decision to suspend my education.
Two months later, in July 2010, I had a
sub-total parathyroidectomy (3 parathyroids
were removed, along with my thymus),
though this only granted me a week of
symptom-free life. Then, in
September 2010, I had a distal
9
pancreatectomy (about half my pancreas
was removed) and an unexpected unilateral adrenalectomy. My pancreas has remained functioning (though it gives me
pain at meal-times), and I don't have any
signs of diabetes, though, while I haven't
suffered from hypoglycaemia since that
operation, I still feel fatigued, forgetful, depressed, and debilitated.
Disappointed after two significant operations - and my pituitary tumour not being
taken seriously by the doctors at the time it seemed that my symptoms, clinging to
me for as long as possible, were the result
of one last parathyroid tumour. This was
finally removed at the start of June this
year, meaning that I'm now on life-long vitamin D and calcium (which I don't really
mind - I even think the calcium tablets taste
like candy sticks I used to have as a child!).
Unfortunately, I still didn't feel any relief
whatsoever from the symptoms that have
pestered me persistently since leaving university. I started to wonder if it was all just
psychological, but I pushed and pushed for
explanations, making my doctors give me a
second 72-hour fast, as well as other nonstandard blood-glucose tests, and had
them keep me in hospital when they were
ready to let me go home. Eventually, I got
them to take my pituitary tumour seriously bizarrely, up until this point, they thought it
was insignificant compared to the more
pressing parathyroid and pancreas problems, but they just ended up forgetting
about it entirely - and I'm now in the process of arranging medication for a prolactinoma, which I am desperately hoping (via
lowered testosterone) is the cause of my
symptoms, as it's the only untreated MEN1
condition I have left.
Through all this, my treatment has not
been without its fair share of
complications: I have suffered through
the unforgettable pain of two extreme
infections, one of which shut down
members’ news
my digestive system, while the other played
havoc with a kidney and later threw up a
stone; my second operation caused a surprise pulmonary embolism, which was
missed by the medical team at the time and
was only incidentally discovered on a CT
scan; and I have been on the receiving end
of some unfortunate medical absentmindedness, forcing me to take control of
situations that I oughtn't have to deal with
without profes“..I have been
sional help.
Canadian Cutie!
Congratulations to Sarah and Colin Hekhert from Mount Hope in Canada on the
birth of their first child, Emily (pictured below),
who was born on December 15 2010.
Emily has MEN2b and is due to undergo a
thyroidectomy this month. We wish Emily
and her family all the best for her forthcoming surgery and hope that we will get to
meet them all sometime soon.
on the receiving
So, on the face of
end of some
it, it would seem
unfortunate
that I have a lot to
medical
be sad about, yet,
through it all, I
absenthave never really
mindedness..”
minded having
MEN1. I've been
unsure about my future, and concerned for
my education, but it has never really upset
me. I am too grateful for the fact that my
family will never be affected, and for the
tremendous work done by AMEND; and I
am so lucky to be a patient with 21st century medicine and modern doctors, that I
simply cannot feel unhappy about it. To
me, it's a strange, sometimes painful quirk
of my bodily mechanics, but it's one that
will soon be brought under control, and my
most difficult trials are not in dealing with
the health condition itself, but rather with
making sure that my doctors are paying
sufficient attention to all aspects of my
case.
MEN1 Research Officer Success
Congratulations to Jason Keller, AMEND’s
MEN1 Research Officer, on attaining a first
in his Neuro Sciences degree at University
College London. Jason is now about to
embark on his PhD in San Diego and we
wish him the best of luck!
NPF Produces New Pancreatic
Tumours Resource
The UK’s Net Patient Foundation (NPF)
have recently produced a publication regarding non-functioning pancreatic tumours.
You can view this title online for free at
www.netpatientfoundation.org/2011/06/ourlatest-booklet-now-available/, as well as
their other titles at
www.netpatientfoundation.org/category/
patient-resources/patient-information/
Many thanks to Callum for sharing his
story. If you would like to do the
same, we would love to hear from you!
10
Thanks to the NPF, this publication will
also be available on the AMEND website
in due course, in the usual publications
section.
special report
escort me by train to Kyoto and to my hotel. It
was fascinating to have this time to get from
her an insight into Japanese healthcare, the
Consortium and Mukuroji-no-kai. Later I met
the group’s MEN2 representative, Minako
Tanaka (pictured below) and her lovely children,
Hidehara (below right) and Yumi (below left), who
diligently translated so much during our wonderful evening meal at a riverside Tofu restaurant (a Kyoto speciality).
Joint Japanese Genetics Society
& AMEND Meets Mukuroji-no-kai
Kyoto, Japan, June 18th 2011
Working for AMEND has pushed me further
than I ever expected, both personally and professionally, but never did I expect it to take me
as far as Japan.
Dr Akihiro Sakurai from the Shinshu University
School of Medicine in Japan had invited me to
speak about the role AMEND plays in helping
people with MEN at a symposium during the
Joint Japanese Genetics Societies meeting at
Kyoto University on June 18th.
Sadly in March, shortly after arrangements began to be made for my visit, the catastrophic
earthquake and tsunami hit Japan’s east coast,
followed shortly afterwards by the Fukushima
nuclear plant breach. After expressing
AMEND’s deep sorrow at the situation and a
period of slight uncertainty, the conference organisation continued – testament to the tenacity
and resilience of the Japanese people.
I admit that I was concerned about travelling
such a long distance alone, especially after bilateral adrenalectomies and with a short 3-day
turnaround. With a little preparation however, it
was no more difficult than any other trip I have
taken, just with a lot more in-flight entertainment! I checked my travel insurance and
counted my pills, working out beforehand the
doses I would need on the 12 hours of flying
that I would be doing via Helsinki to get to
Osaka and in light of the considerable time difference (with this preparation I never get jetlag).
Dr Sakurai is a medical advisor for and supporter of the Japanese MEN patient group, Mukuroji-no-kai and a member of the Japanese
MEN Research Consortium. The patient members of Mukuroji-no-kai were invited to attend
the symposium and this gave us all a wonderful
opportunity to get to know one another over the
weekend, despite some language difficulties!
Dr Miyuki Katai from Tokyo Women’s
Hospital also supports Mukuroji-no-kai
and was kind enough to meet me at
Osaka airport on Friday morning and
11
The next day brought another new experience; the Maiko experience! Minako had persuaded me to accompany her and the children and to become a trainee Geisha (Maiko).
At 1m75cm, the super-high wooden sandals
made me possibly the tallest Maiko in history!
It was an eye-opening and at times hilarious
experience which produced some fabulous
photographs. We walked
in full costume to a local
temple, entertaining the
tourists along the way
and trying desperately to
breathe in the humidity
whilst wrapped tightly in
our kimonos (which are
made of too many layers
to count). We just had
time to wash off the white
face paint and change
before heading to Kyoto
University for the Symposium so there was no
time for nerves!
It’s funny how medical conferences the world
over are identical in so many ways. Because
of the language barrier however, I was kindly
provided with an interpreter who helped me
to understand the other presentations in
the MEN session from Dr Akihiro
special report
Sakurai, Mr Suzuki (an endocrine surgeon from
Fukushima medical school), Dr Uchino and the
Mukuroji-no-kai president. My presentation was
last and focussed on AMEND’s methods of patient support (‘Patients supporting patients’) and
I truly hope that other patients attending the
session found it useful and motivating – certainly this was the feeling reported from the Mukuroji-no-kai delegates.
Some translated
presentation slides
After the conference’s evening reception Dr
Sakurai and Dr Katai took me on to another
restaurant not far from the university where the
members of Mukuroji-no-kai had gathered for
their social event. The warm friendliness of
everyone there was very touching. There was
so much laughter and we have some great if
rather fuzzy photos to remember it by. I collapsed happy but exhausted into my bed that
night!
The next morning was an early start – an 8am
pick-up if I remember correctly! Two minibuses had been booked for a spectacular
sight-seeing tour of Kyoto. We visited Nijo
Castle (pictured below), now a museum but once
a palace for Kings and Shoguns. Then it was
on to The Golden Temple, a photo of which is
now my computer wall-paper. Here we tried
traditional Japanese green ceremonial tea
and cake under the shade of the beautiful
pine trees. We finished with lunch at Kyoto
station (a stunning piece of modern architecture in its own right) after which it was sadly
time to say goodbye to all my new friends as
they went to catch their trains home.
Everyone had been so kind and generous
during my stay that it was hard to leave, but I
have some fantastic memories and wonderful
photographs to sustain me, as well as the
thought of new friends in far-away places!
Much like AMEND, Mukuroji-no-kai is made
up of a group of great people backed up by
supportive and approachable medical specialists. We are very much looking forward to
continuing our new-found friendship into a
long and positive future for all MEN patients.
Thank you Mukuroji-no-kai!
Jo
Dr Akihiro Sakurai (hiding at the back with AMEND
cap on!), Dr Miyuki Katai (holding a ceramic cat!),
Minako Tanaka (standing 3rd from right)
12
fundraising
British 10k London Run
Sunday 10th July
Successful team raises almost £5000
so far....
Sunday 10th July was a beautiful day for running in London. A slight breeze and early cloud
cover meant that the AMEND team had ideal
conditions to begin their race along Piccadilly,
and the sun seemed to arrive at the same time
as the runners crossed the finish line along
Whitehall. Along the route, the runners took in
the wonderful sights of London such as Trafalgar Square, The London Eye, The Houses of
Parliament, and the venue for the recent Royal
wedding, Westminster Abbey.
Jo and Cameron Grey caught up with the team
at the Embankment at 8am prior to the race for
a team photo and were at the finish line to
cheer them through.
ple of energy drinks, and then we set off
again and I felt like I was flying past Big Ben
and Westminster Abbey - on a complete
sugar high! It's amazing how good sugar
makes you feel when you are low. This whole
experience has been such a personal boost
for me, having a goal to work towards and
proving to myself and everyone that I can
bounce back after my surgery last year, I
should be paying you for the confidence that
this experience has given me!"
Left: Toria (centre) tackles her hypoglycaemia under the
watchful eye of the Houses of Parliament
Right: The ladies skip to the finish line!
Even allowing for their stops, the ladies finished the run together with an amazing time
of 1 hour and 14 minutes.
Left to Right: Kristina McIntyre, David Rowe, Marc Smith
(Cameron Grey at front), Craig Bull, Toria Maxfield, Rachael
Howard
AMEND MEN1 Member, Toria Maxfield and her
friends Rachael Howard and Kristina McIntyre
who were also acting as Toria's 'wing-women',
were easy to spot in the crowds with their striking AMEND athletic Tshirts. Toria had her pancreas removed just last year and therefore had
to make 3 stops during the race to check her
sugar levels and take on the appropriate extra
sugar.
After the run, Toria said, "Best bit for me
was that I went into a hypo on
Westminster bridge and so we took 5
minutes for me to glug down a cou-
13
Craig Bull and Marc Smith, teachers at The
Hayesbrook School in Tonbridge Kent, had
run the London Marathon earlier in the year
and admitted to having done no further training since. It didn't seem to affect their performances and they crossed the finish line
together with Hayesbrook School Headteacher David Rowe (who had been training
hard!) in under an hour (57mins 11seconds).
You can even experience the run on YouTube as filmed by Marc Smith, accessible via
our website!
Interested in the 2012 Run?
AMEND has 12 places reserved for the 2012
run on July 15th, just days before the start of
the 2012 London Olympics, so if you are feeling inspired and would be interested in being
part of next year's team, running part of the
Olympic Marathon course, then please contact Jo as soon as possible. We would also
love to see more supporters come along
next year to cheer the team on and
fundraising
perhaps even host a post-run picnic in Green
Park!
Congratulations and thanks to Andy, Cindy
and their intrepid team!
Each runner receives an event photo, chiptiming, a free AMEND athletic Tshirt, links to
AMEND's Virginmoneygiving.com online fundraising page, and any other help you may need.
Sahara Trekkers’ Big Bash
A minimum individual fundraising target of £100
applies.
Kathy Rice, whose husband has MEN2b, and
her friend Sara are busy raising funds for their
Sahara Trek places. During the summer they
decided to go Moroccan for an evening:
“It was awesome! We had a gorgeous spread
of Moroccan inspired food, thanks to the efforts of both our moms and multiple friends of
Sara's cooking club, and Sara made some
excellent educational posters and an African
music mix. And there was belly dancing!
Congratulations team 2011!!
Andy’s 3-Peakers Team
Saturday 18th June
AMEND member, Andy Baker and team successfully completed their 3-Peak Challenge
raising more than £1200 for AMEND.
Andy reported, ‘Cindy and I completed the
Yorkshire 3 Peaks on Saturday. Fairly horrendous conditions for the first few hours but then it
cleared nicely to give some spectacular views
from the tops of Whernside and Ingleborough.
Cindy completed the walk with friends in 10
hours and 57 minutes beating their initial target
of 12 hours, and I completed it in 6 hours
45 minutes beating my target of 8 hours.
I think there was probably about 30 people
who came and a big success - we raised at
least $1350! John and I are pretty much
blown away by everyone's contributions, that
in $$ and also that of sweating it out in the
kitchen to help make it such a success.
And we are beyond thrilled and appreciative
of our dear friend Sara who really knows how
to throw a great party!”
Well done to you both, and good luck with the
continuing fund-raising!
A great time was had by all, and a few beers
were shared last night in recounting how deep
we'd fallen into the boggy areas etc.
As I was flying round aiming for a time, I didn't
stop for any photos but Cindy and the guys she
was doing it with stopped for one at the top of
each peak.’
AMEND was able to supply the ladies
with resources to explain to their guests
about MEN. If you would like help with
your fundraising event, please get in
touch with Jo and Janet at the office.
Join us on our Saharan Adventure in
November 2012
Call us or see the website
Cindy (right) and team-mates at the top of
Whernside (the highest of the 3 Peaks)
14
fundraising
Shark 0 - AMEND 1000
Christmas Cards
We reported last quarter on endocrine nurse
Judy Darwent and endocrine surgeon Barney
Harrison’s shark swim in aid of AMEND. Well
here’s the photographic evidence! The pair,
who both work at the Royal Hallamshire Hospital in Sheffield, managed to raise over £1000!
Once again, quality charity Christmas cards
and other seasonal goodies from Pheonix Trading are now on sale to UK members, families
and friends. Jo runs this on AMEND’s behalf,
and the charity receives 100% of the commission from sales. In addition, all Phoenix Trading’s Christmas card sale profits go to charities
including Macmillan Cancer.
Thank you!
A brochure has been included with UK postal
newsletters. Placing your order is even easier
using Jo’s Phoenix website:
www.phoenix-trading.eu/web/amend
We hope to offer this opportunity in the US and
Australia next year— if you’re interested in becoming a trader for AMEND, please get in
touch with Jo.
Volunteer Vacancies
MEN2a Telebuddy
Working from home
Support AMEND with Minimal
Effort!
We have many ways in which you can
support AMEND without having to run, trek
or swim! Take a few minutes to check out
the following:
1.
2.
3.
Everyclick.com. Set this search engine
as your homepage and specify AMEND
as your receiving charity, and each time
you perform a search, a penny goes to
AMEND
Virginmoney.com charity credit card.
Apply for this credit card and you can ask
for the cash-back you will earn on purchases to go directly to AMEND
Recycle4charity.co.uk. We have enclosed an envelope with UK postal newsletters for you to recycle your unwanted
mobile phones and empty inkjet cartridges, raising money for AMEND in the
process. Check their website for a list of
wanted cartridges
It really couldn’t be simpler!
15
Given AMEND’s continuing increase in membership, we are looking for another MEN2a
Telebuddy. Training is provided and the time
commitment is approximately 1 hour per week,
making 6-monthly calls to our other MEN2a
members. You will need to be a confident, supportive person with the ability to listen rather
than have in-depth knowledge of the disease.
You will also need to have email in order to
contact overseas members. Reimbursement of
applicable telephone call costs can be arranged
if you have itemised telephone bills.
Part-time Office Administrator
Tunbridge Wells office, Kent
Jo and Janet are urgently looking for an extra
pair of hands to help out in the office near Tunbridge Wells in Kent, especially as Janet is due
to undergo hip replacement surgery shortly.
If you can spare a few hours a week, are computer literate, enjoy variety and learning new
things, then we would be very happy to hear
from you. A sense of humour is essential!
Training will be provided and reasonable
out-of-pocket expenses reimbursed in
line with our expenses policy.