new issue - issue 4 - summer 2014

Issue 4
d
IT’S CAL’S
MONSTER TEA
PARTY!!
Funny Lumps is a charity working in Scotland to deliver a
range of support services to children under 18 (and their
families) living with Neurofibromatosis (Nf) including:
Help with education and employment
Help accessing information
Peer support for children and their families
Social events.
CAL’S MONSTER TEA
PARTY – 6TH SEPT 2014
12pm-2pm
CAL and Funny Lumps return to the
Riverside Transport Museum nearly
a year after Funny Lumps Official
Launch Event.
CAL says,
“I am really looking forward to seeing
all my Pals at the Monster Tea Party.
We all should have a Monstertastic
Time. Bring a bear or doll dressed
as a monster.”
You are all invited to :
The Riverside Transport Museum
100, Pointhouse Rd,
Glasgow
G3 8RS
Registered Scottish Charity No. SC039910
Message from the Chair
Karen Ferguson
Hello everyone, I hope you all had a fabulous summer. Looking at the pics on Face book it
certainly looks that way. It’s always great to read about what families get up to in the school
holidays. I know how difficult it can be, when your child has additional needs, to be able to get
the whole family organised and out for the day or off for a weekend or longer. So many other
things to think about. Not just “did I remember to pack the sunscreen” or “will there be enough
juice for everyone”. Having a child with additional needs means a day out has to be planned
with regimental precision and at the same time flexible enough to change at a moment’s notice
to reflect your child’s mood and needs on that day. Well done to all of you for “surviving”
another summer.
Now you are all facing the next big step. Back to or starting school. The anxiety of being
separated perhaps for the first time from that precious child can be overwhelming but we have
no option. On the whole the kids cope better than the mums do. If your child with Nf1 has just
started school or nursery and you are worried about them for any reason don’t hesitate to talk to
the staff. Parents often ask if they should mention Nf when their child is starting school. This is
purely a personal choice. My advice is always go with your instincts. If you know your child is
going to need support then don’t hesitate to arm the school/nursery with as much info as you
can. Remember – you know your child best. If you need any info on Nf and its possible impact
on your child’s learning then let me know.
At Funny Lumps, the summer gave us the chance to catch our breath. The last few months had
been so busy. We had CAL’s birthday party at Gorgie Farm which was a huge success. So
much so that sadly I don’t think the farm can continue to accommodate us. The room was
bursting at the seams with adults, kids, buggies and CAL!!! The kids had a fantastic time and
so did CAL. Then there was the Sea Life Centre Day, which sadly I had to miss but which I
have heard was another brilliant family day out. The whole day including an exciting treasure
hunt was a great success thanks to David Wynne.
As you all know we are in the middle of the Loom Band Challenge at the moment and at the
Monster Tea Party on 6th September there will be a loom band table where anyone who wants
to add to the giant loomband while chatting can do so.
CAL is looking forward to seeing everyone at the Tea Party and I am too and hearing all about
everyone’s summer and back to school.
See you all soon for tea and cake..........yummmmm (oops I sound like CAL now) .
Karen Ferguson
Chair
Registered Scottish Charity No. SC039910
Summer 2014 ● Issue 4 ● Funny Lumps
CAL’s FIRST BIRTHDAY PARTY – GORGIE CITY FARM
CAL'S Birthday party was attended by lots of
excited children and parents. There were some
fantastic fancy dresses, with two of the children
winning prizes for the best ones. Everyone had a
chance to pet a selection of animals in The Pet
Lodge. The children got to hold snakes, rats,
tortoises, rabbits and even a lizard!! This obviously
gave the kids so much pleasure and a lot of
confidence being around animals.
It was then time for the Birthday Monster to arrive
and everyone sang Happy Birthday to CAL and he
blew out all of his candles on his cake. Taking very
special care not to singe his fur! All of the children
then had party food and cakes and listened to some
fantastic music.
Everyone then played Piñata, taking it in turns blind folded to try and get the sweets out of the Piñata! The
children were hitting the Piñata especially hard and finally one of the children managed to smash it!
It was then onto Musical Statues. The children tried very hard to stay still and CAL really struggled and was the
first to be removed from the game. But CAL didn't mind.
Whilst the children were having fun, this gave all of the parents’ time to chat
about the kids and especially about the realities of Neurofibromatosis Type 1. It
was a few of the families first time at a Funny Lumps event and it was great to
finally meet them all. After so much chat online it's great to eventually meet
people face to face and form lasting friendships.
Sadly, all good things come to an end, and it was time to say goodbye to the
children and families, and say goodbye to CAL. As you can see from the
photos below, the important thing was all of the children's smiley faces. There
were definitely lots of these!
Summer 2014 ● Issue 4 ● Funny Lumps
CAL’S PALS AT THE SEALIFE CENTRE
CAL and his Pals had an amazing day at the
Sea Life Centre at Loch Lomond Shores. All
the families were treated to a VIP Tour of the
center by the Sea Life's Entertainment Staff,
which made the visit so much more
educational. The day was attended by over 50
people.
The kids got to see lots of amazing sea
creatures and fish and were able to touch
some of them in the center’s rock pool area.
We were blessed with a wonderful
sunny day and the kids and families
were able to get outside after the visit
and have some fun in the woods. CAL
had received a letter from his friend
The Gruffalo, who asked the children to
try and find his treasure in the Deep
Dark Wood. Following a series of
clues, amazingly, the children did find
the Gruffalo’s Treasure. This then left
just enough time for everyone to enjoy
the park and have a little playtime.
The parents had a great opportunity to
catch up with new friends and chat
about their kids progress and swap tips
and advice. Everyone is very much
looking forward to the next event. I
hope it's soon!!!
Registered Scottish Charity No. SC039910
Summer 2014 ● Issue 4 ● Funny Lumps
FUNNY LUMPS RECIEVES A KILTWALK GRANT
Eva Brodie presented Captain Boo’s Lion’s cheque to
Karen Ferguson, which she had received on behalf of her
team, from the Kiltwalk at a presentation evening at The
Central Hotel in Glasgow on 21st August 2014.
Eva received her cheque from The Kiltwalk’s Chairman at
the event which totalled an amazing £5,770.
Funny Lumps would like to thanks Eva and all who took
part in this years Kiltwalk events.
Fundraising such as this is essential to ensure the charities
future activities and we hope for similar success again next
year. Get Kiltwalking Funny Lumps!!
SUPPORT FUNNY LUMPS AND WALK IN THE KILTWALK 2015.
ENCOURAGE YOUR FRIENDS AND FAMILIY TO SUPPORT FUNNY LUMPS.
Funny Lumps has registered two teams for Edinburgh and Glasgow Kiltwalks in 2015. It is essential for
our fundraising purposes that all who walk register for our nominated team. This is to ensure that any
money you raise is eligible for a Kiltwalk Grant to Funny Lumps. The team name for next year is CAL’S
PALS. A password is required to register for our team. You can get the password by emailing
[email protected] or via private message on Facebook.
Use these links to register for The Kiltwalk:
Glasgow Kiltwalk
Edinburgh Kiltwalk
If you’d like a team registered for your local Kiltwalk, please get in touch.
HAVE FUN WHILST FUNDRAISING FOR FANTASTIC SCOTTISH CHILDREN’S CHARITIES
Summer 2014 ● Issue 4 ● Funny Lumps
ANDREW CORNEY – MY NF1 MARATHON
CHALLENGE
I remember being diagnosed with NF when I was ten and going into Primary 7.
Spending a week between the Inverclyde Royal Hospital and Royal Alexandra
in Paisley, countless Doctors and tests, visual tests, being put into CT & MRI
machines and being photographed for the British Medical Journal (since I was
then, one of the youngest diagnoses they’d had) was quite terrifying for me.
However, the results didn’t really come as any surprise, I think deep down, I
always knew I had been different. (for the want of a better word).
At different stages in my life I noticed the different effects of having NF.
Up until I was about 16 it was sports and a mild speech impediment. I was the
kid you nearly always picked last at gym class, I had little (or no) co-ordination
which made nearly every sport a challenge. The only sports I was picked first
for were tug-of-war and shot-put because of my size vs everyone else.
Caused by a tumour putting pressure on my pituitary glad and causing
premature puberty. which was another “issue” for a ten year old - being 5’9”
and 14 stone, makes you stand out just a wee bit. When I was 16 I totally
fluffed my highers. That was the first time I noticed any learning difficulties.
Up until then I considered myself to be average/above average for most nonlanguage subjects. I re-sat them the following year and gained the results I
needed. It wasn’t until 2nd year at the University of Glasgow when it was
linked to my NF. My learning difficulties weren’t to do with understanding the
subjects, it was more to do with the knowledge getting “locked away” when I
was put under pressure (exam situations).
I consider myself relatively fortunate, I had a fantastic family to support me, great consultants around Glasgow and
when it comes down to neurofibromas, I’ve managed to reach 32 and only have a handful showing. The only part of
NF which has always got to me, is my head size.
After leaving school until 2010, other than the odd visit to the gym, I didn’t do much exercise. Mainly because I
wasn’t good at any sport, every time I thought about running/swimming I kept thinking “nah, you weren’t any good at
that stuff” and leaving it. It was a mixture of my partner Nic training for her “race for life” and watching Eddie Izzard
run his 43 marathons in 51 days that finally made me think “I could probably do this.” So the following night,
sounding like an 80 year old asthmatic, not having an athletic bone in my body, I went out for my first run. I
absolutely hated it, however, I stuck with the training plan.
I ran my first 10km in Glasgow about 4 months later and from then on I worked my way up to 2013 and 2014 where
I’ve completed marathons. For the first time in my life I felt I really accomplished something and challenging the
biggest hurdle - myself. Anyone who gets the running buzz, will tell you that you just want to keep on pushing
yourself further and further. Which brought me on to my 2015 challenge for Funny Lumps. I wanted to go beyond
the 26.2miles of the marathon, so I decided on entering 3 of the 4 events at EMF2015 and lose 3 stone in the
process. I know I’m never going to be the fastest, but at the end of the day, other than a few elites, we’re all only
really racing against ourselves.
FOLLOW ANDREW’S CHALLENGE VIA HIS BLOG WWW.ANDREWCORNEY.CO.UK
AND SUPPORT ANDREW IN HIS CHALLENGE VIA JUSTGIVING.
Summer 2014 ● Issue 4 ● Funny Lumps
CAL’S PALS KIDS CLUB
CAL’s Pals has been running for just under a
year now and we have a membership of around
30 fantastic kids. It’s open to children affected
by Nf and their siblings.
On joining the kids will receive a Welcome Pack
containing:
 A Membership Card.
 A CAL’s Pals Badge.
 A signed photo of CAL.
 A Letter from CAL.
For details of how to join visit our website linked
below.
CAL’s Pals Web Page
CAL’s SHOP
CAL now has his very own shop on his website. We are placing new merchandise on there at regular
intervals. At the moment you can find, wristbands (adult and child sizes), pin badges, CAL’s Social
Story Book – CAL at School, are now selling CDs and digital downloads of CAL Songs performed by
Philmari. Visit CALs Shop today.
Summer 2014 ● Issue 4 ● Funny Lumps
FANTASTIC FUNDRAISING
DONNA GREENALL AND FRIENDS – ICELAND BAG PACK
Many thanks to Donna Greenall and friends for organising and taking
part in a Bag Packing fundraiser at their local Iceland. They even
managed to arrange for Hello Kitty and Fireman Sam to attend the
event. They raised an amazing £538 on the day and such good fun
was had by all. Thanks to everyone that took part.
KYLE AND TRACY THOMSON – PRIMARY SCHOOL FUNDRAISER
Tracy and Kyle Thomson held an amazing fundraising day at their
local primary school. Among other things they organised an amazing
raffle and raised a fantastic £395 for Funny Lumps. CAL was invited to
the school for the day and had a monstertastic time with the kids.
Thank you so much everyone who was involved.
WENDY CAMPBELL – KILTWALK MACHU PICCHU
Wendy Campbell has now departed for Machu Picchu as a member of
the Kiltwalk Team. She will be undertaking a 6 day trek during her visit
in an amazing part of the World. We’re sure it won’t be easy. Wendy
has organised a Race Night and Bingo evening among other things to
enable her to reach her target. All at Funny Lumps, thank her and
wish her all the best for the trek.
To Donate click here.
OTHER FAB FUNDRAISERS
Chatelherault Primary School
Dynamic Earth
Royal Yacht Britannia
Springburn Academy
Alex & Brian Cook
Caledonian McBrayne
Gorgie Farm Park
Briarlands Farm Park
Lomond Folk Club
Beth Beattie
Funny Lumps would like to thank all of our fundraisers, on behalf of the kids and families, for their
continued support. Without you all we would not be able to survive as a charity. If anyone would like
to fundraise for Funny Lumps, please get in touch with [email protected].
PLEASE SUPPORT US, TO SUPPORT YOU.
Summer 2014 ● Issue 4 ● Funny Lumps
THANKS TO OUR SUPPORTERS
Funny Lumps would like to thank the following for their support, without which our activities would be
much more difficult:
Robertson Trust
Children in Need
Weir Trust
The Sitting Room Photography Studio
Mr. Earl Jacobs
Awards for All
Foundation Scotland
Royal Yacht Brittania
Kernow Barn Holidays
Oliver’s Restaurant and Function Suite
THANKS EVERYONE, BIG HUGS AND TAKE CARE
Funny Lumps
Tel: 0141 554 1382 Email: [email protected] Website: www.funnylumps.org
Twitter: https://twitter.com/FunnyLumps
Facebook: https://www.facebook.com/pages/Funny-Lumps/257997900940296?fref=ts
Registered Scottish Charity No. SC039910
Any items for consideration for inclusion in the newsletter should be emailed to [email protected].
Registered Scottish Charity No. SC039910
Summer 2014 ● Issue 4 ● Funny Lumps