Fundraising newsSPRING 2012

Saving lives through education, advances in treatment, and f nding a cure for Barth syndrome

1.Registered as a charity in England and Wales, number 1100835 • Affiliated to Barth Syndrome Foundation

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.

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 benefted 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 Sheffeld.

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.

Standing orders from families and extended family members have continued to provide our everyday income during these diffcult times.

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 offces.

Claire Clements, Philip Brown’s beloved childminder donated £268 from the sale of books, toys and equipment.

Barth Syndrome Trust1 The Vikings, Romsey, SO51 5RG,

United Kingdom+44 (0)1794 518785

info@barthsyndrome.org.ukwww.barthsyndrome.org.uk

Donations:www.bmycharity.com or by cheque to

Barth Syndrome Trust20 Regal Drive, East Grinstead

RH19 4SB, United Kingdom

Fun at the Bristol Clinic for boys and siblings

In memory of Philip Brown22 May 2005 – 29 September 2009

Hearts for BarthFrom 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 BarthPhilip’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.

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 rescueBarry 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.

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 fve indoor tennis courts. The tournament which benefted 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

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.

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.

CAke BAkeMy 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 offce. 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.

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Terri (centre) presents prizes to the winners, Eric McCann & Julie Frankland

Xuen Quartet: Shi Ling Chin, Ching Chun Chuang, Jr-wei Chen and Chris Brown

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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 offces 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 Offce 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 Benefts section made a donation in lieu of sending Christmas cards. Julie and Linda also manage several collecting boxes in the area.

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.

Sponsored eventsMARATHonSkaren olden ran the Cambridge Half Marathon on behalf of Mitchell who has Barth syndrome. She fnished 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

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 2011Lizzie 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’ SWIMEden 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.

Jerry, Mitchell and Suzy

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.

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.

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 fnished in magnifcent 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 SummerneWTon VILLAGe ReVeLSGill 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 FairTerri 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, Kerry-Ann, 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 beneft of raising awareness of Barth syndrome at well-attended fundraising events.

John O’Groats to Land’s EndJoshua 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 friends were keen to get involved

to help make this fundraising successful. Planning and training for this was the most diffcult 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 frst 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.

Land’s End to John O’GroatsThomas 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.

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Joshua Haycock and his nephew Isaiah

You can donate online at bmycharity.com.

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.

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Allison, TerriAmo-Bonner, RosemaryAmos, EdenAmos, GillAmos, Jan & RoyAmos, MargaretAnderson, CarolAnderson, Edward, Emily & CharlieAnderson, Tommy, Allanna, Jay & AlfieArmstrong Jones, PeregrineAshley, RichardAshworth, MaggieAvon Valley Country ParkBain, ShonaBarratt, John & LindaBarth FranceBarth Syndrome Foundation CanadaBarth Syndrome Foundation, Inc.Barth Trust of South AfricaBasingstoke Tennis LeagueBat and Ball ClubBatten, ItsyBeamiss, PaulBearman, MattBeynon, AyesheaBidault Matt Birch, AlisonBlackbourn, LucyBliss, JoshBlue MerleBowen, Cathy, Ray & TomBoyere, Olivier & AnneBristow, CandiceBristow, GemmaBrown, Alan & Lange, MaikeBrown, ChrisBrown, MichaelBull LynBull, David & SarahBumstead, NikkiBuncombe, ElizabethBurchell, JanBurgess, KellyCaerphilly Masons ArmsCaldwell, KerryCallcut, John and TinaCaplan, JeffreyCarter, AndyChallenger, Paul & MargaretChamberlain, S.Charles FamilyCity & Guilds, CardiffClarke, PeterClayton, NicolCleaner, LindaClements, ClaireCline, Tony & SueCoates, GailCobbold, Tom

Coldstream Hills Winery, AustraliaColeman, Michael & HelenColeman, WilliamCommons, JonCondliffe , Cynthia & DavidCooper FamilyCopland, JoannaCraigie, John & EileenCraigie, PeteCrawford, JaneCrawford, Michael, Eleanor & MichaelCrews, CarolineCrick, CarolCrismann, Seb & JaniqueCroft-Baker, Lesley, Thomas and HarryCroot, ValDamin Mandy, Claudio, Connor & Lia Damin, Marco, Michaela, Nick & MatthewDamin, NoriDas, Mr & MrsDavid Hamilton & Co.Dawson, KateDegive, Bernard, Valérie & JulesDerbyshire Dales District CouncilDishman, PaulDoherty-Bigara, JérômeDorman, SiobhanDowning , Kevin & KatherineDurocher-Yvon, Steve & MeganEasterbrook, Isabel, Ralph, Ieuan, Alex & AneiraEaton, CatEcho & ECG team, Bristol RoyalEdman, SharonEvans, LizEvans, SophieEvans, WendyExwick Pharmacy, ExeterFarmer, StephenFarrow, Rachel & Skerratt, Mark, Harriet & JoeFell, NatalieFerguson, JoanneFletcher, EdnaForest, ScottFrench, BoFriends Therapeutic CommunityFrost, Gemma & Reddin, AdamFrost, Michael & AngieGarratt, Dr VanessaGibbs, DeniseGilmour, LisaGoddard, HenriettaGoddard, Mr & Mrs A.H.Grant, Alec & Catherine Graves, NicolaGreen, Suzy & JerryGreenhouse, CreditonGrochowska, Ludwika

Hagan, KimHall, Joe Hampshire Court HotelHarbidge, HannahHarries, LynHarrington-Smith, LucyHarris, TristanHartley, JeannetteHastings, Dr RobHaycock, JoshuaHill, SaskiaHindriks, AlberdineHinton, James & HayleyHMRC Staff, CardiffHobbs, JackieHoldsworth, DaphneHolland, VickyHolmes, Pam & RowlandHolmes, SamanthaHolt, VanessaHope, ChristineHornby, AnthonyHoward, ChrisHowe, MalcolmHSBC, BristolHughes, BranwenHunt, TimJames, AdrianD.N.Jenkins Ltd, FordhamJogai, Divya, Sanjay, Siddhant & SaraJones, CynthiaJones, HelenaJones, PatrickJones, SJukes, AmandaKain, RichardKendall, AndrewKing, AndreaKings’ School, Winchester, Yr 8Kirkpatrick, James Koehler, DanielKoehler, RichardKoh, AmeliaKorndorfer, JohannaKulik, Dr. WillemLallemand, Madeleine & JulesLawrence, SheilaLee, KathrynLegal & General, CardiffLendrum, CarolineLester, Andy & JacquiLivings, KarenLoo, Jo & Albert vanMacDonnell, Karen & CaitlinMackenzie, DavidMajumdar, Dr. ArnieMannes, Florence & PhilippeManton, Greg & Kerry-AnnManton, Joan

Grateful thanks to Friends of the Barth Syndrome TrustTime, Advice and Donations

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Manton, Rob & AnnickManton, SoniaMartin, Dr RobMatthews, ClareMay, DerekMcCulloch, RossMcShane, CarolineMcSkimming, MMessenger, JohnMichener, KathrynMoore, Nigel & LornaMuldon, ClareMumford-Rudd, Manda & AllisonMurphy, HelenNeale, VanessaNelson, LaidleyNewbury-Ecob, Dr. RuthNewman, PatNiblett, Martin & LouiseNorgate, Mrs CNyack, AdrianOakley Tennis ClubOates, KyraOlden, KarenOlden, LeeOram, Richard & HeatherOverton Methodist ChurchOvington, Justine ErinOwen, SarahParish, CherylParker, CliffordParkhurst, YolandeParry, MichellePayne, AbigailPettigrew, VeronicaPhair, AlanPiette, Astrid & ArthurPilkington, RhianPlay Centre Staff, Bristol RoyalPoll, BobbyPorter, BevPotter, HelenPotter, RosalindPrest, SimonPrice, JulieRaeside, Alec Rago, VeronicaRatzker, Nicole

Raynor, HenriettaReddin, MickRedman, Pauline Rees, GaynorReimar, Abi, Norina, Biggi & MichaelRennie, TrudiRice-Hartley, EmmaRichardson, JeanetteRiddiford, DebbieRiseborough, KateRobbins, MatthewRoberts-Collins, CaraRogers, Rev Dr SarahRoig, Richard & AnaRoyal Gwent Hospital, StaffRudd, JulianRudd, MatthewRudd, TimothyRuzicka, HelenRuzzier, Susan & PaoloSalmon, LawrenceSalmon, RobertinaSaywood, LilaSchlapak, Gregor & SonjaScott-Flegg, SusannaSecker Harriet & AmelieSecker, Andrew & SherrySecker, SharonShackleford, JoShakespeare, RuthSharpe, FamilyShilliam, MariaSimmons, Mike & SoniaSmith, EdwardSmith, RoseSmith, SamanthaSmith, Wilf & BrendaSolihull Police Station, StaffSoltani, LadanSperoni-Collu, SusannaSt Catherine’s Church, CaerphillyStagg, Capt ChristopherStagg, Lizzie & KevinStannington Friendship Agewell GroupSteward, Dr Colin & ChristineStobart-Hook, Barry & NikiStobart-Hook, Guy & LizStrain, Donna

Stuart, StellaSwennen, Erik & VeerleSymonds, AlistairSzalay, CarolineTaylor, SarahTelesford, MichelleTemple, Sam, Ailsa & PoppyTerry, MalcolmThompson, KimThomson, Nigel & ClaireThorne, AntonyThornes Farm Shop, CreditonThorpe, JeremyThorpe, ThomasToon, KayTowle, TeresaTrust, Shudy CampsTsai-Goodman, Dr. BevVecchi, Guilia & AntonioVerdon, SheleneWalsh, YvonneWanders, Dr RonaldWard, Anne & BarryWare, JennyWarner, RosemaryWatson-Marlow LimitedWessels, Leigh-AnneWest, LauraWestern, SueWestgate Primary School, OtleyWhite, JanWhite, MarkWhiterod, BrendaWilks, Gemma & PhilWilliams, MaryWilliams, Nigel, Mary, Annabelle and ChloeWilkin, Robin, Hanna, Ethan and ThomasWilson, SamanthaWites, Agnieszka & WojciechWitzani, Horst & LindeWoodward, Tracy & IanWoollen, KateWoollen, RobWoolley, Scott & JulieXuen Quartet

Together we’re making a difference