news and views from
Max Appeal’s largest
donation ever!
The story from Squire Sanders
Solicitors in Birmingham p10
in this issue...
Consensus Launch
Weekend Camp 2013
Max Book Launch
Foodie Fun!
MARCH
2014
in the
news...
22q
society
L
A ROUN
DUP FROM MAX APPEA
Family registration for the 9th Biennial
International 22q11.2 Syndromes Meeting
Writes Damian Heine-Suner:
The 2014 Conference Organizing Committee Cordially Invites Families to Register for
The 9th Biennial International 22q11.2 DS Meeting; at PALMA AQUARIUM in Palma de
Officially launched on 22nd January 2014 Mallorca, Balearic Islands, Spain - From June 21st – 22, 2014.
(had to be a 22nd !!). This is a society Following a similar scheme as previous meetings, the International Family Program will
for academics, researchers, medics and include scientific sessions and short courses given by international experts, as well as
other professionals who have an expertise workshops addressing the needs of children, teenagers and adults with 22q11.2 deletion
or interest in 22qDS.
syndrome and their families (simultaneous translation provided). In addition, there will be
Max Appeal is helping the founding group
of “22q Glitterati” to establish the society
as an independent charity and support
its administration/secretariat functions.
www.22qsociety.org
plenty of fun activities that will take place in the wonderful venue of the Palma Aquarium
Meeting Center (palmaaquarium.com/eng/) at Palma Beach. It will be a great opportunity
for families from all over the world to meet and get to know each other. We want to
create the environment and the atmosphere to promote interaction and synergies amongst
us and generate fruitful collaborations and friendship. We want this to be a meeting that
both specialists and families will enjoy. We look forward to seeing you in Palma!.
FOR MORE INFORMATION • TO SUBMIT AN ABSTRACT • TO REGISTER ONLINE
• TO MAKE A RESERVATION • PLEASE VISIT WWW.22Q11MALLORCA.COM
WHAT’S INSIDE...
Note from the editor: This newsletter has been ‘in production’
for quite a while.. eons, in fact! So it gives you an idea of the types
of things that Max Appeal has been getting up to and a few of the
amazing things that Max Appeal supporters have done… but we
just couldn’t get EVERYTHING in. So apologies to those whose efforts
are not recorded, we really do appreciate everything that people do!
MEETINGS & CONFERENCES..............4
MAX APPEAL OFFICES...............................5
MAX’S AUNTY IN PRINT!.....................5
WEEKEND CAMP.................................6-7
PARENT’S AUTISM WORKSHOP........8
CRUMBALL RALLY...................................8
GREAT NORTH RUN..............................8
NEW TRUSTEE..........................................9
SUPER SQUIRE SANDERS!.............10-11
22Q AT THE ZOO...........................12-13
FOOD FOR THOUGHT.......................14
MARY COOKS UP A STORM.............15
NATIONAL CONSENSUS LAUNCH
THE LAUNCH OF MAX APPEAL’S NATIONAL CONSENSUS DOCUMENT ON 22Q11.2
DELETION AT TEA IN THE MEMBERS’ DINING ROOM ON MONDAY 15TH APRIL 2013
A key event in Max
Appeal’s history…
Tracey said a few days later, “I am trying to Coppinger and Mark
come down to earth again. It was brill. Fab. Bradbury, who then
decided to join
Loved every minute. xx”.
Sarah closed her presentation with this plea: forces with
“Today it is our turn to make you think about 22q Squire Sanders
with the help of this Consensus Document. solicitors...who
Tomorrow it is your turn to spread the word and have chosen
help people understand. Tomorrow it will be time Max Appeal to
for society and government to realise that sometimes be their charity of
it is just too difficult to seek gainful employment the year for 2013.
when you have a syndrome such as 22q, or when It can’t be over-emphasised
you are bringing up a child that needs your help that fundraising is vital to the life
because they cannot help themselves. Tomorrow it of small charities. Our fundraisers are very special to us!
It might well seem that a consensus document is
not really a great deal to make much of, but
then.. stop and think! Max Appeal managed to
get about 60 clinicians, experts, academics and
other professionals to agree? How did that happen?
Well I can reveal to you that it wasn’t easy, for
us or the authors of the chapters. It really was
tough going for Dr Dinakantha Kumararante
(known to all as Kumar) who was the brains
behind the idea and chief co-ordinator, it wasn’t
all a barrel of laughs for Jeremy Allgrove either, will become a realisation that the children with 22q
are all turning into adults and need help to be able
as he pulled together the bibliography.
to have an adult life. Tomorrow it will be time to
Mind you, Jane Brown thought it made wonderful
commission a proper study into the long-term
bedtime reading!
effects of 22q on adults. Does tomorrow ever
Furthermore there were plenty of people who come? Max Appeal and their sponsors and we
travelled many miles for the event, Dr Anne Bassett, believe it should and will – but only with your
psychiatrist University of Toronto, Dr Anne Swillen, understanding and help.” (Max Appeal likes this!)
Leven University, Dr Donna McDonald-McGinn
Finally it was time for Julie Wootton, one of the
Children’s Hospital of Philadelphia, Dr Damian
founders of Max Appeal to say her bit (or lot;
Hiene-Suner from Mallorca, along with Dr Diewirt
she can really waffle). Julie first spoke to Donna
de Waart, in Cambridge and Dr Merel Pannbakker,
in Philadelphia just before Christmas 1998 when
Cardiff, Dr Julia Cadogen Bristol, Dr Clodagh
Max was not doing so well in intensive care.
Murphy from the Maudsley and GOS.
Max Appeal came to life following the death of
Our eloquent speakers engaged the audience her son Max in 1999. Then in 2002 while researching
into spellbound silence!
immunology information she came across some
fabulous cartoons created by Hilary Joyce.
Hilary introduced her colleague Kumar to Max
Appeal. Kumar thought it would be great thing
to do a consensus document (a what??)… and
in this bizarre world such small twists of fate
shape a huge future…
Mark Tripp said: “The best part for me was seeing
Sarah and Tracey make their speeches, they gave
me encouragement that Adam can achieve whatever
he wants to in life. They were incredibly brave and
their speeches were very moving.”
Andrew Selous MP said: “I have just put down
two Written Parliamentary Questions to the
Secretary of State for Health, one to find out the
number of people in England with 22q Deletion
Syndrome compared with the number of people
with Multiple Sclerosis and Huntingdon’s Disease
and secondly I have asked whether he will adopt
the National Consensus Document as NHS policy.
I hope that replies will be helpful in making
progress on this important issue.”
Max Appeal has registered its interest with the
secretary to the House of Commons regarding
our wish to establish an All Party Group (known
as an APPG) for 22q Deletion. If you think you
can get your MP on board with this then let us
know. Send a copy of the consensus document
to your LEA, talk to your clinical teams about it…
Julie presented glass trophies to Max Appeal’s spread the word!
biggest fundraisers of 2012; Martin Silvester, Ed
3
spreading
the news!
Eurordis (European rare disorders group) – they have a pan
European platform with auto –translate called RareConnect, sadly it’s
not technical enough to cope with the consensus document, but worth
flagging up Max Appeal’s profile. Anyone who thinks they could moderate
such an on-line group should get in touch.
BCS (British Cardiovascular Society) – Julie attended this, she is also a
board member for Cardiovascular Care UK which is the patient arm of
the BCS. She hopes to see rehab being available for congenital patients,
as it is for coronary.
Birmingham Children’s Hospital, Cardiac Workshop –
lots of useful information about complex conditions and treatments, and
always useful to maintain relationships with cardiac teams because, as we
all know, they are frequently the first people who will see 22q babies!
VCFSEF (Velo-Cardio-Facial Syndrome Education Foundation) in Dublin
– Claire Hennessey and Julie Wootton spoke about accessing reliable
information, the information standard, and (of course) the consensus
document as being rock solid!!
General Paediatricians regional meeting in Cardiff – surprisingly many of
the paeds there had not only heard of 22q deletion but also Max Appeal
AND the consensus document, one said “Oh, I’m so glad I’ve got hold
of a copy of this.” However another said something along the lines of:
I don’t need to know this, I see quite a few patients with this condition
but I think the care they receive from me is more than adequate.
(Ed. You can’t win them all!
Manchester Medical Society Paediatrics Club meeting –
again, it is important to try to get the consensus under the noses of these
very strategic members of the medical team; if they know the condition
they know what services your children should be accessing.
Genomics England – this is a project of David Cameron’s to try to
sequence the DNA of 100,000 people within the UK… there are lot of
different ways of looking at this sort of project, morally and ethically, and
all the knock effects of this level of genetic knowledge of individuals…
BUT they should know about 22q for sure!
BCCA (British Congenital Cardiac Association) in Edinburgh – loads of
consensus documents went but it has to be said that possibly Cadbury’s
had more to do with it than Julie Wootton’s eager charm. (Ed. What??)
IN GS
THEL
– 22q being the most common of these, we
thought it might attract a bit of interest! This year new trustee, Sarah
Goodyear attended the Scottish event in Edinburgh and Julie Wootton
spoke at the event in Belfast with Gillian Cassidy, who is striking up a
group there and Anne Lawlor of 22q Ireland… made for an impressive
line-up of 22q support and highlighted the need for joining together.
S & ME
ET
NT
E
Rare Diseases Day
UKPIN (UK Primary Immunodeficiency
Network) meeting in Liverpool – this
was a really good event; Hilary Joyce
was invaluable here as her scientific and
immunology colleagues literally flocked round
the Max Appeal stand to catch up with her and so provided a captive
audience for Max Appeal and the consensus document.
EV
It has been all hands to the pump at getting as many consensus documents
into the sweaty grip of receptive (or otherwise) professionals! We have
attended as many meetings and conferences as we can… and we have
dished out thousands of copies:
WS
ESTNE
T
A
Obviously that isn’t all the meetings and what have yous that have been
attended by Max Appeal over the last year, but hopefully it gives you an
inkling of what we are doing behind the scenes on your behalf. It is pretty
relentless and HUGE thanks has to go to the trustees, volunteers and
our part-time staff because everyone is working their socks off.
NEW SPACES!
Thank you to Ruskin Glass Centre in Stourbridge, and Elizabeth Wood in particular for supporting
Max Appeal and allowing us have space on a VERY peppercorn rent! It is now all up and running
and Steph is enjoying her new cosy work environment!
We are so happy to be part of the Glass Centre environment it is perfect fit for Max Appeal, and
it has to be said the facilities are marvellous and the atmosphere is very welcoming and calming.
HELLO! (Writes Steph)
My name is Steph Jasper and I’m your happy helping administrator
for Max Appeal. I’m the lady who tries to make sure we only
ever allow real people and families joining our Max Appeal
web pages as we don’t want advertisers or scammers. I also
keep the membership database as up to date as possible (I ask
you please to let me know when you move home or change
email address) and I’m the one who sends out any requested
Consensus documents and information in the post.
I also try and help out our other trustees and members when they are
organising any events, such as 22q at the Zoo and local member meet ups.
We have just opened a new office in a lovely little warm portakabin at the Ruskin Glass College
site (www.rmt.org/glasshouse) Glasshouse College in Stourbridge is one of three independent
specialist further education colleges operated by Ruskin Mill Trust, providing Practical Skill Therapeutic
Education for young people aged 16 to 25 years who have a range of learning difficulties,
This is a really lovely
including autistic spectrum disorders and behaviours that challenge.
book written by Max Lechner’s Aunty Nucky
I have a little boy called Jack who will be 5 in May who was diagnosed
with beautiful illustrations and endorsed by
with DiGeorge by amniocentesis before he was born. As they
prima ballerina Darcy Bussell no less! The book
had picked up a major heart defect at the Feotal medicine unit at
launch was in the Lechner’s home town of Aberdeen
Birmingham Women’s Hospital. I remember lying on the bed seeing
and was very well attended, including Max Appeal
a Max Appeal poster wondering “what’s that all about, won’t be
trustee Sara Goodyear.
anything to do with me or my baby”. How I was wrong.
Max was a lovely boy whose life tragically ended
far too soon and this is not only a very touching
Donna McDonald-McGinn from Children’s Hospital of Philadelphia
tribute to him but a really nice story of a very
tried her hand at blowing glass when she took a tour at Ruskin
engaging chap who warmed the hearts of everyone
Glass Centre. Thanks again to Elizabeth.
who was fortunate enough to know him.
www.ruskinglasscentre.co.uk
NEW!
MA XI
BEAR
Get in touch if you’d like a copy!
OUR BRISTOL BASE...
We’ve been fortunate to have being renting an office at Coombe Lodge near Blagdon (just south
of Bristol airport) for a few years now. All the stalwarts at Max Appeal will be very familiar with
Claire Hennessey and her tireless efforts to raise money and awareness of 22q and Max Appeal…
and do loads of other stuff as well!
Our fabulous
new desk buddies
are available to purchase
...an essential assistant
for every office!
5
weekend
camp
Some people might think that woodsman crafts is not a good thing for us to
encourage.. I mean, sharp knives for whittling wooden tent pegs, archery and
shooting lessons… what could possibly go wrong???
Actually, nothing did go wrong, thanks to impeccable planning by Caroline
and Simon Lonsdale and fabulous leader Super-Guy. In addition grass-sledging
is great, sumo wrestling should be banned (ed. if I get beaten again), the nettle
fritters were wonderful, everyone enjoyed setting fire to bits of wood to
cook things on, then there was a lovely walk in the woods with an opportunity
to poke things with sticks and take on an assault course that would be a complete
run-away-from job at school but no-one was there to laugh, well nasty laugh
because we were all in tears at the soggy trainers… everyone took their turn at the
washing up bowl (good training for trustees, that is!!) … and a few bottles of wine put
the grown-ups in a very happy frame of mind in the evening round the camp fire. Stunning photos...
thanks to the Harvey-Ascrofts!
The point of all these events is to have fun, do
something you wouldn’t do otherwise (ed. like
sleep in a tent!!), get to know other 22q families
and for the younger ones to fall in love…
Don’t miss out on the next camp session,
visit www.maxappeal.org.uk
for the details.
OR
G. U K
FOR MOR
NFO VISIT
EI
M
AX
A PP EA L.
7
PAWS (Parents Autism Workshops and Support) has been set up by Dogs for
the Disabled partnering with the University of Lincoln and the National Autistic
Society, to bring together the parents and carers of children with autism to
share experiences and to explore the helping potential that a pet dog might
have within their family.
Here’s what they say...
It’s been observed that there is a special chemistry between the dog and the child,
the dog having an incredible calming effect when a child with autism is angry,
anxious or distressed. They can distract a child away from disruptive or dangerous
behaviour and create a space for the parent or carer to take control of a situation.
These observations have led us to believe that a well-trained family pet dog can
have a massively beneficial impact.
Throughout the UK, parents now have the opportunity to attend a series of three, one
day workshops run by Child Development and Dog Training & Welfare Project Workers. Workshops
cover a range of topics, from selecting the right dog for the child and family, to family involvement,
and practical ways in which the dog can help the child’s development. Following the workshops, the
PAWS team offers ongoing support for all families enrolled.
The PAWS team welcome any applications from families affected by 22q Deletion Syndrome.
Please visit http://paws.dogsforthedisabled.org/ to see if there are any workshops near to you.
crumball rally
Says David Reeves: “Taking part in a challenge event is a great way to support Max Appeal.
Not only can you fulfil life-long ambitions, but you also raise money and awareness for the
cause. The more bizarre the challenge, the better press coverage you will get and the
more money you can raise! I recommend it to anyone!”
Not heard of Crumball Rally? The idea is to buy an old banger, paint it up and then
drive it through Europe.. “Buy it, Paint it, Thrash it, Trash it”. See all of David Reeves
and Mark Sandercock’s fun at: www.facebook.com/CrumballRallyforMaxAppeal
GREAT
NORTH
RUN...
WELCOME TO NEW TRUSTEE
I am Sarah, married to Simon, a mechanical engineer
and keen runner, who is unfortunately having to
have a year off running due to other commitments.
I am mum to Matthew, aged 15, Daisy, aged 10
(who has 22q DS) and Millie, aged 8. We live
north of the border, in Aberdeenshire, although
I originate from Warrington. I used to work as
a physiotherapist, but after the birth of Millie,
around the time of obtaining Daisy’s diagnosis,
I never went back to it after maternity leave. I have
worked as a registered child minder for the past
6 years, a job that enabled me to be at home for
Daisy and my other children and be able to go
for the numerous hospital appointments. Four
months ago we moved out to the country with
our dream of the good life, planning on keeping
chickens and ponies and growing veg, so I have
stopped working as a child minder and we have
spent the summer building a hen house… it’s a
very upmarket one!
It was a terribly long drawn out process getting
a diagnosis for Daisy. She had been extremely
poorly with a large VSD, which was repaired
when she was 5 months old and I was told I
should enjoy her and not worry about things
like DiGeorge when I pushed for the FISH test.
They had told us that during surgery, they discovered
the thymus gland was absent, so of course I trawled
the internet and soon came up with the diagnosis
of DiGeorge when I fed in the symptoms, heart
defect and absent thymus. Eventually she was
tested and was found to have the deletion. It
was devastating….all the sites I had been looking
at painted such a black picture and I was convinced
she would succumb to an infection and we
would lose another child (my second baby, Robert
had been stillborn). Suddenly Max Appeal’s
website came into my internet search and this
was the great beam of light & hope that I had
been searching for. The information was so helpful.
Sarah Goodyear
With the handbook (no consensus document at
that stage) and a very helpful GP, we were able
to wade through the many tests and checks that
Daisy needed, I would arrive at the practice
with, “I’ve been reading and I think Daisy needs a
kidney scan/immunological assessment/hearing
test…” and the GP found the appropriate
consultant. He also discovered the 22q clinic at
GOSH and referred us, such a relief to see health
professionals who didn’t need me to explain
what the condition was.
Most of us complain about feeling isolated, and
that was so true for me. It seemed particularly
bad up here, no one seemed to have a clue what
DiGeorge was. Julie Wootton then told me
about a family that had moved up to Aberdeen
from London, their 4 yr old son had 22q, and
Julie encouraged me to get in touch with them.
This I did, and what a wonderful experience
meeting Max and the Lechner family was. Max
was a delightful boy, so friendly and bubbly. He
arrived at our front door with a “Hi, I’m Max”
and shook our hands accompanied with such a
cheeky grin…. for the first time, we felt that
things may not be so bad. His mum was full of
helpful advice and I felt so much more positive
after that meet up. Many of you will know that Max
became very ill Christmas 2011, and devastatingly,
he died…we will never forget him.
22q, a weekend
organised by Max
Appeal. I still see this
as one of the best
weekends I have ever had,
sharing info with the other parents, seeing the
kids bond so well, being so relaxed in that sort
of safe environment and generally all of us having
a good laugh. Once again I realised the value if these
meet ups, both for the children, and their carers.
Although the last 10 yrs have been extremely
difficult at times, lots of low patches and I’m
sure there will be many more trials to face,
I know that I could have not got through so well
without the support and advice from Max Appeal.
I felt that I would like to give as much back to
the charity as I was able. Realising the value of
meeting up with other 22q affected families,
I have tried to organise some meet ups for
Scottish families. We have been to Edinburgh Zoo,
10 pin bowling in Aberdeen, Dundee science
centre and are off to the Yard (a play centre for
youngsters with additional needs) in Edinburgh
on 1st Sept.
Having a battle to get Daisy diagnosed and then
to get the necessary tests/treatment etc has
made me realise how worthwhile the consensus
document is, so I am very keen to get it “out there”
Daisy and I attended a Max Appeal conference
and ultimately for there to be a multidisciplinary
at Bristol. It was great to hear the professionals
22q clinic in Scotland and I will do all I can to
speak about the condition, but equally good to
help this be achieved.
meet other families affected by it, and to see
our wonderful kids mixing together and having 22q has changed my life. There have been low
a ball. A couple of years later, we were fortunate points but highs as well, and although it’s taken
enough to spend the weekend at Keilder at an a lot of getting used to, it’s not so bad and the
outdoor centre with about 7 other children with people I have met here have been very special.
As ever we had loads of keen runners, all chomping at the bit to pound the roads between Gateshead and South Shields. 22 runners completed the
course raising a whopping £13,000. New phrase: “only mad dogs and Englishmen go out for a Geordie run!” Seriously it’s a great weekend,
and this year we were again able to buddy up with Children’s Heart Federation, so we got to go on a boat trip up the Tyne (we didn’t crash even with
Archie behind the wheel) and Hartly (CHF mascot) came along... actually Archie Wootton couldn’t wait to get inside the pink costume and turned
out to be a natural performer.. BUT the head is difficult to see out of, and rumour has it that Hartley was occasionally spotted waving enthusiastically
to empty pushchairs… (utterly hilarious!).
If you want to do a half marathon or even feel like you do one of those and then turn round and run back again ie a full marathon, or indeed
any other test of endurance (and idiocy) get in touch and Max Appeal will provide you everything we can to help you achieve your target.
Email Paul@maxappeal.org.uk
9
fundraising
A SPECIAL REPORT ON OUR CORPORATE SPONSORS
SQUIRE SANDER’S SOLICITORS IN BIRMINGHAM
This is a company that likes to roll their sleeves up and get down to business!
RUN!
First off, the dinner at Opus restaurant in Birmingham was a ‘blast’! The bloke from Acme
Whistles blew us away with his amazing history of iconic whistles, ie the ones everyone
knows; from policeman’s whistles to the toot-toot of the US trains…quite incredible.
BUT what was more incredible was the amount of money raised, which was about £10,000!
MUDDY
CHALLENGE
What’s this all about? Errrm… it’s sort of a very
silly 10km assault course where lots of people
run up and down hills, wade and crawl through
mud, get scratched by barbed wire, electrocuted
by by cables in the ground, slide down soapy
slides and swim through trenches filled with icy
water. Really, can you imagine a better way to
spend a Saturday morning??
They also like running at Squire Sanders, so a
team was entered for the Great North Run and
a few hardy souls also survived the Birmingham
Half Marathon (thanks to EC Harris for the
generous continued partnership and use of their
tremendously well placed office in Baskerville House.
The Great North Run is always a fabulous experience
Here are a couple of before and after shots to (ed. particularly if you’re not running; someone has
give you a bit of an idea of what these loonies did! to cheer at the finish
line, don’t they??)
SHWAPPING
Take your unwanted designer gear, pay a small
fee, buy some cakes, get your nails done, have a
drink and take home something new for your
wardrobe for free… SUCH a great idea!
HANKS TO EACH
AND E
OUR T
VERY
ONE OF YOU!
SNOWDON
...THE AFTERMATH!
On Friday 21st June, in support of Max Appeal, Sam Clancy, Ellen Inglis, Pam Kahlon, Rebecca Storer, Sophie Taylor, Daniel
Carlile, James Thorman, and Ben Tompkins (Known as “The Snowdon 8”) set out to conquer Mt. Snowdon (1081m) – THREE
TIMES in one day.” With 50-70mph gales and heavy rain forecasted, the advice to bring sunblock seemed hopelessly optimistic.
8
the
SNOWDON
06:00 Nevertheless, a prompt 06:00am start beckoned and after a quick roll call, the Snowdon
8 began their ascent of Rhyd Ddu (Rebecca is not on crutches at this point, for those
wondering, and James is not checking BBC Sport’s gossip column).
08:00 First ascent…conquered (Sebastien Vettel celebrations may need a little work…).We were
soaked to the skin (lateral/inverted rain tends to do that) and wind-beaten (gusts of 70mph
turned out to be accurate) but making good time.
08:01 After double (triple) checking that the summit café was in-fact closed, we set off for the
Pyg track descent.
08:05
Powerful gales and face-splitting rain made for challenging navigation (even with a GPS)
and the Snowdon 8 walk straight by the Pyg track, oblivious but happy to be descending
out of the cloud and the worst of the weather – march on, and on, and on, and on (pretty
much to the lake in the photo below).
09:00 Former mountain rescue team member claims this was “definitely rescue weather”.
10:15 Reach the bottom of what was clearly (in hindsight) not the Pyg track or the Miners track,
as intended, but in fact the Llamberis path.
Despite having a reputation for being the “easiest” Snowdon route, with 8 climbing miles
in the legs already, the Llamberis is not to be underestimated. On the lower half of the walk,
objects in the distance never seem to draw nearer and towards the latter stages, the terrain
veers up beyond the 35% mark in places and walking at a normal pace is impossible.
Mentally and physically, this was a tough stage. (Ed. Is he hoping his jacket will act like wings?)
11:45 A sighting of Snowdon’s funicular train – a key indicator that the summit café would be open…
12:30 Arrive at the summit to find that the café is closed…for the day (two team members take
All told, this was a fantastic challenge
for a very worthy cause. The team
were delighted to have reached their
target of £1,000 so quickly and have
been really taken aback by the continued generosity of those who continue
to donate now. As of this morning, the
fundraising total stood at
£2,212.31
(ed. Grief.. another 22!!)
Many thanks to all –
here’s to the next one!
8
the
SNOWDON
this news particularly well – see picture)! Sam (inexplicably) gets bitten by a dog – we’re
fairly confident that this appears in no Snowdon guide book. With morale bruised and
hunger taking over (with nearly 13 climbing miles in the legs) a quick rest was taken before
setting off to find the Pyg track and a place to eat which was out of the clouds.
12:45 Here, the most technical descent on the walk began. With the wind blowing, the cloud
low hanging and the approaching traffic consisting of anxious walkers in a race against time for
their own challenges, the slippery mountainside made this a slow, patient and painful effort.
13:45 Located the Miner’s track and, once on this flatter and more consistent surface, managed
to cover some good miles
15:30 Reached our final turning point (the Miner’s Track causeway) and headed home for the
final ascent and descent. All manner of fatigue was developing at this stage (with the
exception of Pam, who seemed to be getting fitter as the challenge progressed) and we were
probably still too far away (approx. 7 climbing miles) to get overly excited. The return
climb of the Miner’s / Pyg awaited…
18:00 Jubilation (?) as we reached the summit for the third and final time (wind almost swept 3
team members away from the narrow platform of the top).
20:00 Reach the bottom of Rhyd Ddu. Tired, excited, relieved…hungry.
Look at the distance travelled! “Fix!” I hear you cry? Absolutely not!!
20:30 Arrive at the pub.
11
ATIONAL AWARE
N
R
E
T
NESS
IN
Max Appeal families did it in style again! It is truly heart-lifting to stand in a zoo and at
lunchtime watch all the red t-shirts converging at the rendez-vous point!
Nine venues and over 300 people turned out… there’s not much to say except, thank
you to the local organisers, it is a test of endurance and patience to work through all the
spread sheets, dish out the tickets and co-ordinate all those people… but it is a bit of a
L’Oreal moment “because you’re worth it!” Great to catch up with people and have a natter.
I think one year we’re going to have to run a photograph competition because we have
some very talented dads! Dave Conroy, Nick Harvey Ascroft and Mark Tripp…
just to name a few!
This year we are again supporting nine venues… and you can book your tickets
on line and buy t-shirts, hats, bears and all sorts of things!
Look at the pictures and enjoy!
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DAY 2
2q
AT THE ZOO
This picture is the Farmer family and they are quizmasters! Two great quizzes…
lovely evenings and raising money to boot!
13
FOOD for
THOUGHT...
FOOD GLORIOUS FOOD!...We aim to put together some of your
favourite recipes and tips for getting our children into good food habits.
There are loads of suggestions around but I’m sure you all have tried and tested recipes which work well for your family.
Some parents report problems with getting their children to try different food textures and boosting calorie
intakes as being particular challenges for children with 22q Deletion Syndrome. Getting the balance right when
children grow up can be a challenge as managing weight can be a problem.
It would be fantastic if you could share your tips and recipes and send them to; Hilary Joyce at info@maxappeal.org.uk We would like to put
together a recipe book and use it as a fundraiser for Max Appeal. Watch our website for further details.
We all know that mornings can be manic, but making time to start your day with breakfast provides you with the energy and fuel for the day ahead.
Eating a healthy breakfast kick-starts our metabolism, helps us concentrate better at school or at work because we’re not distracted by hunger, and
generally gets our day off to a good start. Here’s a few of quick and easy breakfast ideas from Shake Up Your Wake Up!
Vanilla Honey
Yogurt Smoothie
Chutney Toast with
Scrambled Eggs
Marbled Fruity
Porridge
Prep time 5 mins
Prep Time 5 mins
Cook time 5 minutes
Prep Time 2 mins
Cook time 5 mins
1-2 medium eggs
Dash of semi skimmed milk
1 tbsp Chopped chives ( optional)
1 thick slice wholemeal bread
1 tbsp tomato chutney
50 g porridge oats
350ml semi- skimmed milk ( or full milk)
2 tbsp fruit compote or puree
Fresh seasonal fruit to serve eg raspberries.
100ml semi skimmed milk (could be full fat)
150 g low fat natural yogurt
25g bran flakes
¼ tsp vanilla essence
1 tbsp honey
How to make
Place all the ingredients in a liquidiser or food
processor and blend until smooth.
Pour into a glass and drizzle over some extra
honey to serve (optional).
Hint and Tip: For a smoother texture, soak
the bran flakes in the milk for 5-10 minutes in
advance. Even make the night before and store
in the fridge overnight.
How to make
Place the eggs, milk and seasoning in a small
saucepan.
Cook, stirring occasionally until lightly scrambled.
Stir in the chives.
Spread the chutney on the toast and top with
the eggs.
Hint and Tip: Try any flavoured chutney or relish
for variation.
How to make
Place the oats and milk in a small saucepan and
bring to the boil.
Simmer for 3-4 minutes, stirring occasionally.
Stir through the puree to create a marble effect.
Top with fresh fruit to serve.
Hint and Tip: Try a variety of fruit purees or
compotes, mix and match with your favourite
fruits and what is in season.
FOR MORE OF THESE BREAKFAST RECIPES VISIT: WWW.SHAKEUPYOURWAKEUP.COM
Lunchbox Ideas - The change 4 life website has lots of ideas for healthy lunch
box options: www.nhs.uk/Change4Life/Pages/healthy-lunchbox-picnic.aspx
It’s always a challenge to find something different! The Children’s
Food Trust have more suggestions for lunch boxes
http://www.childrensfoodtrust.org.uk/parents/schoolfood/packedlunches
Sometimes it can be a challenge getting children to eat what we
want them to eat! A varied and healthy diet should provide all the
nutrients your child needs. Every day you should include:
Mary’s Inspired
...taking her catering to a whole new level!
Mary put her cooking skills into practice with a group of young people from Max Appeal during
one of our teens activity weekends. A local catering school ran a cooking day for us and the group
planned, shopped and prepared and cooked their recipes. They even got to eat and share the delicious
food together. (Ed. Gossip has it that trustee Martin Kennedy was chief of quality control!)
Mary has continued with her catering course at school and next year she will take her GCSE in
catering. Mary has been so inspired by her cooking experience! She has two fantastic achievements
to share…. (I’m sure Mum, Caroline is a big influence too, as we all know she
makes wonderful cakes and is a dab hand at camp cooking).
WORK EXPERIENCE
Mary explains... I did my work experience at the Officer’s Mess at
Innsworth because I would like to go into catering when I leave school.
BACON
CLANGER
SERVES 4 / COSTS PER DISH? £2.95
8oz Self Raising Flour (Sifted)
4oz Suet (Atora Light)
1 Large Onion
Bacon Pieces or Normal Bacon will do
Salt and Pepper
Mixed Herbs
1lb Potato’s (Mashed)
Green Beans, Peas & Gravy
When I was there I was taught how to lay a table for silver service,
I set up Breakfast and lunch things, washed all the tables down
ready to be ready for the next function, buffing all the brass, I was
also taught to do the Silver dip, I was able to work on two functions
at the mess, I served food at lunch time and refilled the breakfast drinks
and the tray. I had to be very smart and wear Black safety shoes, black
HOW TO MAKE
skirt which had to be just under the knee, white blouse and a black waistcoat, my
hair had to be up every day. She also got offered a part time job there for next year when she leaves school. 1. First of all Sift the flour in a bowl then add
the Suet, mix with water until you get dough.
MARY MAKES THE FINAL SIX IN COOKING COMPETITION
2. Roll out the dough into a round circle or
Mary entered a cooking competition using her Nan’s wartime recipe and she was one of six finalists.
oblong shape, cover with the onion and bacon,
The recipe has been published in a cookery book.
season with Salt and Pepper and Mixed Herbs.
Mary attended the regional heats in September which
were held in Devon. She went along supported by all of 3. Place on baking parchment on the surface;
her family. Caroline, Mary’s mum says ’ we had to be at I used fry-light or melted butter on the sheet
the show for 8.30am so it was going to be a long day, we
so that the pudding doesn’t stick.
never got to see the judge until the afternoon’. Her judge
was Tom Parker Bowles. Mary made it through to the final 4. Put the Pudding into a steamer for about 1 hour.
6 but unfortunately she didn’t win, but she really enjoyed
taking part and this is why she wants to go into catering 5. Once this is cooking, cook some potato’s
then mash them and serve with veg and gravy.
when she leaves school next year’.
Well done Mary, such a fantastic achievement!
Mary shares her Nan’s wartime recipe….published in Food
Glorious Food.
This has got to be one for the Max Appeal recipe book!
What makes your recipe original?
This is an old dish that was used in
World War II. It was a dish that my
Nan used to have as a young girl.
The Information Standard is a certification scheme for health and social care information. It has
been established by the Department of Health to help patients and the public make informed
choices about their lifestyle, their condition and their options for treatment and care. About
50,000 organisations produce health and social care information for the public in England and
some people can feel overwhelmed by the volume of material and be unsure what to trust.
The Information Standard has been introduced to fulfil the need for a 'quality filter' to help
people decide which information is trustworthy. It provides a recognised 'quality mark' which
indicates that an organisation is a reliable source of health and social care information.
To gain its certification, Max Appeal had to demonstrate that the systems and methods it uses to produce its
material are robust and result in material that is accurate, accessible, impartial, balanced, based on evidence and
well-written. Max Appeal worked with the very nice people at Capita (note: without the extra ‘r’ that Private
Eye keep slipping in) and the Royal Society for Public Health in order to achieve certification. Basically it was really
hard work, thanks to Claire and Hilary for their perseverance.. and to Tessa The Assessor at Capita.
The work continues as now we have the processes in place we have to move all of our information leaflets
(“products”) through the system, oh and modify our systems as there is now Information Standard version 2, just
to keep everyone on their toes! YOUR input in this is essential as we need to have approval from “stakeholders”,
the “target audience” (get me with all the lingo!) and relevant professionals. This is something we will be
constantly working on, watch out for calls to ordure on Max Appeal’s social media sites and our web site.
What is the
Information
Standard?
15
SNOOKERMAN!
Aaron Cook!
I just wanted you all to hear a positive success story to encourage all
families with youngsters with DiGeorge syndrome/22q deletion.
My son, Aaron Cook, was born on 7/10/98.
We were told Aaron was born with hole in
heart and that he had 22qdeletion/DiGeorge
syndrome. We were shocked but later told it
was hereditary and that it came from myself as
I was born with hole in the heart too. We were
told that Aaron had a heart condition called
tetralogy of fallots, which he had repaired when
he was 2 and had a stent fitted later when he
was 12. He was very ill after and was on a ventilator
for 12 weeks but eventually pulled through.
He eventually came home.
The staff and coaches and all the people who
attend the Academy have really helped Aaron.
He feels really safe there and because of this his
confidence has grown. We would recommend
youngsters of any age or disability to take part
in snooker. It helps in all aspects of life. Anyone
interested please contact the South West Snooker
In 2010 a snooker centre opened in Gloucester Academy, they are very helpful.
called the South West Snooker Academy. They I hope Aaron’s story helps families to encourage
held professional tournaments there which youngsters with 22q deletion/DiGeorge syndrome
Aaron asked to watch. We went and met a lot to take up sport and realise the future can be
of the stars who are on tv, too many to mention. bright for youngsters to. If you want to follow
About 3 years ago he saw snooker on the tv
and asked if he could have a go. I said yes and
took him to a local club and he fell in love with
the sport. He became almost addicted to the
sport and improved quickly. We entered in a team
league and in his first season won most games
out of 56 adults which was a good achievement.
Aaron asked if he could start to play there and Aaron’s success we will post all results on
have lessons so he did and his game improved. twitter account “snookerman2013”.
Unfortunately, when Aaron went to senior
by Rob Cook, Aaron’s father
school the problems at school got worse and
recently he asked if he could be home tutored
which I agreed to. He is working hard now, he
As he grew up he encountered a lot of problems trains 9 ‘til 5 at the snooker academy, does his
at school mainly with socialising and making school work in the evening and also goes to a
friends as well. However, he carried on the best gym 3 days a week to help with fitness.
he could. He showed all the symptoms of DiGeorge Snooker has helped Aaron with his confidence
syndrome but learnt to cope with them though and social skills and taught him discipline and
he still has a lot of issues. Now he is coping really dedication. He is an ambassador at the Academy
well and I am proud of what he has achieved for functional snooker which is aimed at getting
because of this.
youths to play snooker and improve maths and
English. He is entering all the junior tournaments
this year which involves a lot of travelling. We
are looking for a sponsor, as Aaron wants to
play snooker professionally when he is older.
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He really enjoyed sport which I encouraged him
to take part in. He tried a few different sports
tennis, football and badminton. He didn’t stick
to these though as he found fitness was a problem.
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like to challenge yourself and help us raise m
If you’d
claire@maxappeal.org.uk and we’ oney for Max Appeal
!
Contact
ll help ma
please let us know
ke your ch
allenge come true!
STOP PRESS!
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