Fundraising news - Barth Syndrome Trust

Fundraising news
SPRING 2012
Saving liv
es
rome
through edu
cation, advances in treatment, and finding a cure for Barth synd
Once again we would like to thank all our donors and
fundraisers for their generosity in time and money. We are
also grateful to everyone whose fundraising challenges
have attracted sponsorship. Thank you for running, cycling,
swimming, climbing, hitting a ball, making and baking,
collecting and for other efforts to help everyone affected
by Barth syndrome. You have raised so far £10,000 this
year.
Where does the money go?
The Barth Syndrome Trust needs your contributions to
continue our work of raising awareness, supporting affected
families and funding research into causes, treatments and
one day a cure. We have recently funded the part-time
neuropsychological assessment post for a year, in an effort
to help boys make the most of their school years. We
welcome Cara Roberts-Collins who as part of the Bristol
Barth Syndrome Service will be working with our school
boys to identify ways in which they learn best and also to
assess whether they have any troubles with attention. After
each assessment, a detailed report will be compiled for the
family as well as the school, together with the necessary
recommendations.
This year, we’ll also be helping to fund some UK doctors
and medical staff to attend the International Barth
Syndrome Conference in the USA, so that they can share
their knowledge with the international community as well
as bring back what they learn to help our local families.
The older ‘boys’ still value the work that we do and the
interaction with the other families. As young men, their
continued involvement and eagerness to help demonstrate
that what the Barth Syndrome Trust stands for and all of
your efforts are important to everyone affected by Barth
syndrome.
Fun at the Bristol Clinic for boys and siblings
Donations:
In memory of baby Jack Reddin, 22 December 2009
– 30 December 2009. HSBC in Bristol gave another
donation, £215.
Watson Marlow Company and Staff gave £100 in lieu
of sending out Christmas cards. Thank you to them
and to the family in Cornwall who nominated BST for
this donation.
The Bat and Ball Club table tennis tournaments have
for many years raised funds from ‘Fines’ and this year
was no exception with £275 collected for BST. Players
from all over the UK descend on Jersey and Guernsey
to play in these friendly tournaments and very kindly
give up their cash for all sorts of spurious ‘offences’
dreamed up by John Callcut and Sarah Whithorn.
The Basingstoke Tennis Club Thanks to the general
knowledge of Colin Phillimore and his team, success in
their Club Quiz benefited BST. Once again, they chose
BST as the charity to receive the proceeds.
Through Linda Barratt we received £200 from the
Stannington Friendship Agewell Group in Sheffield.
Barth Syndrome Trust
1 The Vikings, Romsey, SO51 5RG,
United Kingdom
+44 (0)1794 518785
info@barthsyndrome.org.uk
www.barthsyndrome.org.uk
Donations from friends, families and extended family
members in Europe and UK and Australia have also
been generous. Thank you letters or emails from one
of our grateful families have been sent to all donors.
Donations:
www.bmycharity.com or by cheque to
Barth Syndrome Trust
20 Regal Drive, East Grinstead
RH19 4SB, United Kingdom
Our static collection box scheme is still doing well
although we have had several boxes returned because
of pub closures and chosen charities having preference
in shops and post offices.
Standing orders from families and extended family
members have continued to provide our everyday
income during these difficult times.
Claire Clements, Philip Brown’s beloved childminder
donated £268 from the sale of books, toys and
equipment.
Registered as a charity in England and Wales, number 1100835 • Affiliated to Barth Syndrome Foundation
1.
In memory of Philip Brown
22 May 2005 – 29 September 2009
Hearts for Barth
From his mother, Maike
Lange: Westgate Primary
School, the school where
Philip used to go to nursery,
organised a HEARTS FOR
BARTH fundraising event
for Valentine’s Day. The aim
was that every pupil should
be able to buy a Valentine
heart for their parents.
Everybody clubbed together
to create these beautiful
hearts: other mums, neighbours, grandparents. The needles
and sewing machines were overheating! An amazing £292
was raised.
Xuen Quartet concert for Barth
Philip’s cousin, Chris Brown, sent £300 raised at a concert
by the Xuen (String) Quartet, whose members (including
Chris) are studying at the Birmingham Conservatoire. We
are touched by the kindness of these rising young stars.
the Trust, Anne Ward and Mary Williams. Julie Frankland
and Eric McCann were the eventual winners at the end
of a very enjoyable afternoon. They were rewarded with
bottles of appropriately high quality bubbly provided by
the Management of the Hotel and presented by the event’s
organiser, Terri Allison.
Thank you to Management and Staff of Hampshire Court
Hotel, especially Josh Bliss for all his help. Thank you to
members of the Oakley Tennis Club for their continued
support and to all those who supplied the refreshments.
And a big thank you to the players for a record £500.
Terri (centre) presents prizes to the winners,
Eric McCann & Julie Frankland
Greetings from South Wales:
Isabel Easterbrook reports how family and friends and even
strangers are helping with fundraising (and awareness):
It was after a visit to Overton for a Barth Syndrome Trust
workshop, that I felt I ought to do some fundraising, after
all I write the Thank You letters for BST and see all the hard
work other people put in. February 29th, Rare Disease Day
was approaching – a good opportunity to try something.
Xuen Quartet: Shi Ling Chin, Ching Chun Chuang,
Jr-wei Chen and Chris Brown
Thank you to Westgate Primary School (and Debbie) and
Chris and the Xuen Quartet for organising these events
and for remembering Philip.
Oakley Tennis Tournament - Hampshire
Court Hotel to the rescue
Barry Ward writes: Tennis in the spring is always a hostage
to the weather and, not unexpectedly, the April monsoon
rains forced the cancellation of Oakley Tennis Club’s annual
mixed doubles tournament in aid of the Barth Syndrome
Trust. However, in an impressive gesture of corporate
generosity, the Management of the Hampshire Court Hotel,
Basingstoke stepped up to the service line and hosted the
event, free of charge, on May 6th.
Cake Bake
My sister owns a small cake business, so I thought a few
cupcakes with the Barth syndrome logo would bring in a
few pounds and educate people about the disease. My
sister agreed and her partner said she would sell some in
her office. Legal & General offered to match anything she
raised. Never having organised anything before, I was a
bit overwhelmed when the project gained momentum. I
bought some notice boards and made a small awareness
display. My husband and a cousin also helped and cakes
were sold at Royal Gwent Hospital, Legal & General, HMRC
Cardiff and City & Guilds. I did not think when I started
that we would raise a total of £589. Only one problem - I
didn’t even get to taste a cake.
Thank you to all who bought cakes and raffle tickets and
especially to baker, Kate Riseborough and the Legal &
General for a matching donation.
The Leisure and Spa complex at the hotel houses an
extensive range of excellent facilities but the centrepiece
has to be the huge sports hall with five indoor tennis
courts. The tournament which benefited from the support
of hotel staff, especially Josh Bliss, was a well-contested
event with 38 participants from clubs in the area. As is
usual at this event, players and spectators were sustained
by Afternoon Tea prepared by volunteer supporters of
2.
Other events in South Wales:
Proceeds from a Quiz night at the Caerphilly Masons
Arms raised £107. Thank you to Derek May.
On 25th April St Catherine’s Church in Caerphilly held
a bingo afternoon. The weather was dreadful but
the bingo went well. Not everybody could come but
donations were given instead and £106 was raised.
Thank you to Rev Dr Sarah Rogers, Mrs Helen Murphy,
Mrs Daphne Holdsworth and Mrs Gaynor Rees for
choosing our charity and organising the afternoon.
Paul and Margaret Challenger also chose BST for the
proceeds of An Evening of Mediumship, in Upper
Church Village on 26th April. They heard about the
Trust through the cake sale at the HMRC offices and
wanted to help too. Thank you to Paul and Margaret
and Val Croot and Lyn Harries.
Non-stop fundraising:
Friends and colleagues of Julie Woolley and her mother
Linda Barratt have been busy again. Following his epic
fundraising walk, Wilf and Brenda Smith held a raffle
to raise £200. £77 was received from the Payroll Office
at Derbyshire Dales District Council whose Groovy 1970s
Grotto raised money for several charities. A book sale and
raffle by the Revenues department raised £259, while
the Benefits section made a donation in lieu of sending
Christmas cards. Julie and Linda also manage several
collecting boxes in the area.
time. Patricia hurt her hip after 14
miles but continued bravely to the
end. Over £1500 has been collected.
After her success in this event and the
tremendous support of her friends,
Patricia hopes to be able to do more
for the Trust in the future.
In memory of baby Oscar, 26 October 2010 - 21 June 2011
Lizzie Stagg and Kevin ran the Bupa London 10000 on 27th
May in memory of baby Oscar. Thanks to Lizzie, Kevin and
their donors - £640 collected to date.
‘Cross-Channel’ Swim
Eden whose brother Jack has Barth syndrome spent many
hours in his local pool after deciding to swim the distance
needed to cross the Channel. He had done 18 miles before
a Christmas holiday break in the Alps.
I was boarding down a slope when
I accidently dug the front of my
board into the snow as I tried to slow
down, I fell straight onto my face and
landed with my left arm awkwardly
underneath me! It turned out that I
had a displaced fracture to my left
wrist - both bones - radius and ulna!
Eden was allowed to resume his swimming in March and
successfully reached his mileage target on 22nd having
already exceeded his fundraising target of £1000 thanks to
generous family and friends.
BST Trustee, Suzy Green never stops thinking about
fundraising. She recently held a coffee morning raising
£71.70 rounded up to £100.00 by a friend who was unable
to be there. Another friend donated £40 from the sale of
furniture. Suzy also saves her small change in a collecting
box, raising a fair amount every few months. Suzy has
other plans, so watch this space.
If you are eligible please remember
to gift aid your donations.
If you Gift Aid your donation, BST will receive an
additional 25p on every pound you give. You must
pay an amount of Income Tax and/or Capital Gains
Tax for each tax year (6 April one year to 5 April
the next) that is at least equal to the amount of tax
that BST will reclaim on your gifts for that tax year.
Jerry, Mitchell and Suzy
Sponsored events
Marathons
Karen Olden ran the Cambridge Half Marathon on behalf
of Mitchell who has Barth syndrome. She finished in 2hr 15
min and raised over £550.
Suzy’s sister, Patricia Jones, ran the London Marathon in
April. She made her T-shirt with a large clear Barth syndrome
logo on the back to raise awareness at the same
Planning a fundraising event?
We can supply you with brochures, sponsorship
forms, posters, access to BMyCharity (online donation
and fundraising website where you can publicise your
event and track online donations), balloons, stickers
and tailor-made fundraising literature to support
your particular event.
3.
YOUNGSTER COMPLETES THREE PEAKS CHALLENGE
12-year-old Scott climbed the Three Peaks for various
charities including BST. His friend Nick, 13, (shown here
with Scott) made an appeal on www.bmycharity.com/
Nick3Peaks. ‘I have Barth syndrome so I could never do
this myself but what I can do is support Scott by raising
sponsorship.’ Nick’s update: Congratulations to my best
friend Scott who successfully completed the 3 Peaks
Challenge on 1st June 2012. He climbed the 3 highest
mountains in Scotland, England and Wales, in a great time
of 23hrs 27mins! Scott finished in magnificent style, with
a 100m sprint. Nick’s appeal has raised over £2000. Well
done, boys!
Having heard about the Challenge, Nick’s school has offered
to support BST next year through a Non-Uniform Day.
Nick’s Kitchen - Pam Holmes, Nick’s great-aunt, has again
raised funds (this time to boost the Three Peaks Challenge)
using her cooking skills at the Coldstream Hills Winery in
Australia. Some years ago Pam established a fundraising
enterprise, ‘Nicholas’s Kitchen’ in order to help the Trust.
This year she cooked meals for casual staff during Vintage.
Thank you to Coldstream Hills Winery and staff for their
donations -£185 raised. Coldstream Hills Winery have
generously agreed to match this amount raised too.
Fundraising this Summer
Newton Village Revels
Gill Amos, whose younger son
has Barth syndrome (and whose
oldest son was featured above
in the Cross Channel Swim), has
taken a side show stall (hoopla
or something similar- TBD) at
the Newton Village Revels in
picturesque Newton St Cyres,
Devon, on the 8th July. Over a
thousand people are expected
at the Revels and we all wish
Gill every success with this
stall.
Coffee Morning and Sheep Fair
Terri Allison and Annick Manton, grandmother of Nicholas
(above) are holding a Coffee Morning in the Community
Hall, Overton, Hampshire on Saturday 30th June – 9 am to
12.00. Annick, with son, Greg, and daughter-in-law, KerryAnn, also plan to have a stall at the famous Sheep Fair held
in Winchester Street on 14th -15th July. They would really
appreciate help at both events. Also cakes and books for
the coffee morning and tombola prizes for the Sheep Fair
would be most welcome. There is always the added benefit
of raising awareness of Barth syndrome at well-attended
fundraising events.
John O’Groats to Land’s End
Joshua Haycock
writes:
The day I found out
about my nephew
being diagnosed
with Barth
syndrome I thought
about doing some
fundraising to help
raise money for the
Barth Syndrome
Trust. I came up
with the 900 Miles
Bike Trip from John
O’Groats to Land’s
End on 10th-18th
August. I was
planning on doing
it on my own but
then a group of my
Joshua Haycock and
friends were keen
his nephew Isaiah
to get involved
to help make this fundraising successful. Planning and
training for this was the most difficult thing I’ve ever
had to do but knowing that it’s for a great cause helps
push me to my absolute maximum. Training is a part of
my everyday life from the first thing I do when I get up
to the last thing I do before I sleep but it will be worth it
once I’ve completed the challenge for my nephew and the
Barth Syndrome Trust.
You can donate online
at bmycharity.com.
Land’s End to John O’Groats
Thomas Thorpe hopes to cycle from Land’s End to John
O’Groats during the summer. He writes: A few friends
and I wanted to do this cycle from Land’s End to John
O’Groats so we could ‘get the T-Shirt’. None of us is a
regular cyclist so this will be quite a big challenge for all
of us. We thought that embarking on this trip would be
a great way to pay tribute to those who face physical
challenges everyday - thus we decided to raise money for
the Barth Syndrome Trust!
Best wishes to both teams of inspiring cyclists. You may
wish to cheer them on if you live near the route.
The layout and artwork of this newsletter was kindly
designed by BST volunteer, Candice Bristow. Candice is Colin
Cambell-Gillies’ sister and Ben and Thomas Thorpe’s cousin.
Candice also designed the BSF 2012 Conference t-shirts.
4.
Grateful thanks to Friends of the Barth Syndrome Trust
Time, Advice and Donations
Allison, Terri
Amo-Bonner, Rosemary
Amos, Eden
Amos, Gill
Amos, Jan & Roy
Amos, Margaret
Anderson, Carol
Anderson, Edward, Emily & Charlie
Anderson, Tommy, Allanna, Jay & Alfie
Armstrong Jones, Peregrine
Ashley, Richard
Ashworth, Maggie
Avon Valley Country Park
Bain, Shona
Barratt, John & Linda
Barth France
Barth Syndrome Foundation Canada
Barth Syndrome Foundation, Inc.
Barth Trust of South Africa
Basingstoke Tennis League
Bat and Ball Club
Batten, Itsy
Beamiss, Paul
Bearman, Matt
Beynon, Ayeshea
Bidault Matt
Birch, Alison
Blackbourn, Lucy
Bliss, Josh
Blue Merle
Bowen, Cathy, Ray & Tom
Boyere, Olivier & Anne
Bristow, Candice
Bristow, Gemma
Brown, Alan & Lange, Maike
Brown, Chris
Brown, Michael
Bull Lyn
Bull, David & Sarah
Bumstead, Nikki
Buncombe, Elizabeth
Burchell, Jan
Burgess, Kelly
Caerphilly Masons Arms
Caldwell, Kerry
Callcut, John and Tina
Caplan, Jeffrey
Carter, Andy
Challenger, Paul & Margaret
Chamberlain, S.
Charles Family
City & Guilds, Cardiff
Clarke, Peter
Clayton, Nicol
Cleaner, Linda
Clements, Claire
Cline, Tony & Sue
Coates, Gail
Cobbold, Tom
Coldstream Hills Winery, Australia
Coleman, Michael & Helen
Coleman, William
Commons, Jon
Condliffe , Cynthia & David
Cooper Family
Copland, Joanna
Craigie, John & Eileen
Craigie, Pete
Crawford, Jane
Crawford, Michael, Eleanor & Michael
Crews, Caroline
Crick, Carol
Crismann, Seb & Janique
Croft-Baker, Lesley, Thomas and Harry
Croot, Val
Damin Mandy, Claudio, Connor & Lia
Damin, Marco, Michaela, Nick & Matthew
Damin, Nori
Das, Mr & Mrs
David Hamilton & Co.
Dawson, Kate
Degive, Bernard, Valérie & Jules
Derbyshire Dales District Council
Dishman, Paul
Doherty-Bigara, Jérôme
Dorman, Siobhan
Downing , Kevin & Katherine
Durocher-Yvon, Steve & Megan
Easterbrook, Isabel, Ralph, Ieuan, Alex &
Aneira
Eaton, Cat
Echo & ECG team, Bristol Royal
Edman, Sharon
Evans, Liz
Evans, Sophie
Evans, Wendy
Exwick Pharmacy, Exeter
Farmer, Stephen
Farrow, Rachel & Skerratt, Mark, Harriet
& Joe
Fell, Natalie
Ferguson, Joanne
Fletcher, Edna
Forest, Scott
French, Bo
Friends Therapeutic Community
Frost, Gemma & Reddin, Adam
Frost, Michael & Angie
Garratt, Dr Vanessa
Gibbs, Denise
Gilmour, Lisa
Goddard, Henrietta
Goddard, Mr & Mrs A.H.
Grant, Alec & Catherine
Graves, Nicola
Green, Suzy & Jerry
Greenhouse, Crediton
Grochowska, Ludwika
Hagan, Kim
Hall, Joe
Hampshire Court Hotel
Harbidge, Hannah
Harries, Lyn
Harrington-Smith, Lucy
Harris, Tristan
Hartley, Jeannette
Hastings, Dr Rob
Haycock, Joshua
Hill, Saskia
Hindriks, Alberdine
Hinton, James & Hayley
HMRC Staff, Cardiff
Hobbs, Jackie
Holdsworth, Daphne
Holland, Vicky
Holmes, Pam & Rowland
Holmes, Samantha
Holt, Vanessa
Hope, Christine
Hornby, Anthony
Howard, Chris
Howe, Malcolm
HSBC, Bristol
Hughes, Branwen
Hunt, Tim
James, Adrian
D.N.Jenkins Ltd, Fordham
Jogai, Divya, Sanjay, Siddhant & Sara
Jones, Cynthia
Jones, Helena
Jones, Patrick
Jones, S
Jukes, Amanda
Kain, Richard
Kendall, Andrew
King, Andrea
Kings’ School, Winchester, Yr 8
Kirkpatrick, James
Koehler, Daniel
Koehler, Richard
Koh, Amelia
Korndorfer, Johanna
Kulik, Dr. Willem
Lallemand, Madeleine & Jules
Lawrence, Sheila
Lee, Kathryn
Legal & General, Cardiff
Lendrum, Caroline
Lester, Andy & Jacqui
Livings, Karen
Loo, Jo & Albert van
MacDonnell, Karen & Caitlin
Mackenzie, David
Majumdar, Dr. Arnie
Mannes, Florence & Philippe
Manton, Greg & Kerry-Ann
Manton, Joan
5.
Manton, Rob & Annick
Manton, Sonia
Martin, Dr Rob
Matthews, Clare
May, Derek
McCulloch, Ross
McShane, Caroline
McSkimming, M
Messenger, John
Michener, Kathryn
Moore, Nigel & Lorna
Muldon, Clare
Mumford-Rudd, Manda & Allison
Murphy, Helen
Neale, Vanessa
Nelson, Laidley
Newbury-Ecob, Dr. Ruth
Newman, Pat
Niblett, Martin & Louise
Norgate, Mrs C
Nyack, Adrian
Oakley Tennis Club
Oates, Kyra
Olden, Karen
Olden, Lee
Oram, Richard & Heather
Overton Methodist Church
Ovington, Justine Erin
Owen, Sarah
Parish, Cheryl
Parker, Clifford
Parkhurst, Yolande
Parry, Michelle
Payne, Abigail
Pettigrew, Veronica
Phair, Alan
Piette, Astrid & Arthur
Pilkington, Rhian
Play Centre Staff, Bristol Royal
Poll, Bobby
Porter, Bev
Potter, Helen
Potter, Rosalind
Prest, Simon
Price, Julie
Raeside, Alec
Rago, Veronica
Ratzker, Nicole
Raynor, Henrietta
Reddin, Mick
Redman, Pauline
Rees, Gaynor
Reimar, Abi, Norina, Biggi & Michael
Rennie, Trudi
Rice-Hartley, Emma
Richardson, Jeanette
Riddiford, Debbie
Riseborough, Kate
Robbins, Matthew
Roberts-Collins, Cara
Rogers, Rev Dr Sarah
Roig, Richard & Ana
Royal Gwent Hospital, Staff
Rudd, Julian
Rudd, Matthew
Rudd, Timothy
Ruzicka, Helen
Ruzzier, Susan & Paolo
Salmon, Lawrence
Salmon, Robertina
Saywood, Lila
Schlapak, Gregor & Sonja
Scott-Flegg, Susanna
Secker Harriet & Amelie
Secker, Andrew & Sherry
Secker, Sharon
Shackleford, Jo
Shakespeare, Ruth
Sharpe, Family
Shilliam, Maria
Simmons, Mike & Sonia
Smith, Edward
Smith, Rose
Smith, Samantha
Smith, Wilf & Brenda
Solihull Police Station, Staff
Soltani, Ladan
Speroni-Collu, Susanna
St Catherine’s Church, Caerphilly
Stagg, Capt Christopher
Stagg, Lizzie & Kevin
Stannington Friendship Agewell Group
Steward, Dr Colin & Christine
Stobart-Hook, Barry & Niki
Stobart-Hook, Guy & Liz
Strain, Donna
Stuart, Stella
Swennen, Erik & Veerle
Symonds, Alistair
Szalay, Caroline
Taylor, Sarah
Telesford, Michelle
Temple, Sam, Ailsa & Poppy
Terry, Malcolm
Thompson, Kim
Thomson, Nigel & Claire
Thorne, Antony
Thornes Farm Shop, Crediton
Thorpe, Jeremy
Thorpe, Thomas
Toon, Kay
Towle, Teresa
Trust, Shudy Camps
Tsai-Goodman, Dr. Bev
Vecchi, Guilia & Antonio
Verdon, Shelene
Walsh, Yvonne
Wanders, Dr Ronald
Ward, Anne & Barry
Ware, Jenny
Warner, Rosemary
Watson-Marlow Limited
Wessels, Leigh-Anne
West, Laura
Western, Sue
Westgate Primary School, Otley
White, Jan
White, Mark
Whiterod, Brenda
Wilks, Gemma & Phil
Williams, Mary
Williams, Nigel, Mary, Annabelle and
Chloe
Wilkin, Robin, Hanna, Ethan and Thomas
Wilson, Samantha
Wites, Agnieszka & Wojciech
Witzani, Horst & Linde
Woodward, Tracy & Ian
Woollen, Kate
Woollen, Rob
Woolley, Scott & Julie
Xuen Quartet
Together we’re making a difference
6.