Myotubular Trust ReceptionThe House Of Commons

KINDLY HOSTED BY JANE ELLISON, MPSPONSORED BY CHRYSOULLA KYPRIANOU

Welcome to this very special Myotubular Trust event in the beautiful House ofCommons Terrace Rooms. We are delighted to be here and honoured to have youjoin us for this evening.

The purpose of tonight's event is to raise funds for a cure to save the lives of childrenborn with the devastating condition, myotubular myopathy.

But tonight is also about you. We are very grateful to have you here with us duringrare disease week to celebrate our continuing journey, funding research that has thepotential to change lives. By being here tonight you are giving great hope to familiesand a real chance of life for affected children..

We are very grateful to Professor Francesco Muntoni, Head of the DubowitzNeuromuscular Centre at Great Ormond Street Hospital and Chair of our ScientificAdvisory Board, for coming along tonight, and to Justin Webb for kindly offering tointroduce this evening's programme.

Our reception here in the beautiful Terrace Rooms is being hosted by Jane Ellison MP,and we thank her for her kindness. We are certain that this venue is the perfect settingfor a spectacular evening.

And finally, a huge thank you to those of you who have given so generously in so manyways to make this evening a success – you know who you are! We would not be herewithout you.

We hope you have a lovely night.

With thanks,

Anne Lennox and Wendy HughesFOUNDING PARENTS

WELCOME

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01. Portrait Commission from Royal PortraitArtist, Darren BakerA private portrait commission by one of Britain's mostacclaimed artists, hyper-realist Darren Baker; officialportrait painter of theQueen on the occasion of her 85thbirthday, andofficial artist of the 2012Olympics. Darren’swork hangs in private collections including the House ofLords, Downing Street and St. James’s Palace.Donated by Darren and Abigail Bakerwww.darrenbakergallery.co.uk/darrenbaker

02. Exclusive England football accessTwo tickets to England v Lithuania at WembleyStadium on Friday 27th March 2015; including 2places in the FA Lounge (access only to FA sponsorsand partners); dinner, drinks and pre-matchanalysis with football legends; match seats in thepremium Wembley Club level; half-time drinks andfull time match analysis in the FA Lounge. Plus asigned 2014 EnglandWorld Cup shirt as a keepsake.Donated by Vauxhall Motors

03. Calling all Downton fansA Downton Abbey poster, signed by the entire cast.Your choice of either of Series 1 or 2. Both iconic forthe Downton fan!Donated by Hugh Bonneville and Milk Publicity

SILENT AUCTION04. Bowled over…Two tickets to the England v New Zealand testmatch at Lord’s, on Saturday 23rd May. Plus anoriginal signed photo of the England 2008 test squadvs.New Zealand; two England test shirts - includingthis season's Women’s number 123 - CaptainCharlotte Evans; cricket hat; and a great goodie bagof cricket memorabilia.Donated by England and Wales Cricket Board

05. You shall go to the ball!Two tickets to the red carpet premiere in CentralLondon on Friday 27th March of the new KennethBranagh film for Disney; Cinderella. Starring CateBlanchett, Lily James, Helena Bonham Carter andRichard Madden.Donated by Andrea Tartaglia and the DisneyGroup

06. Quintessential English livingEnjoy a midweek night break, including breakfastand dinner, at the beautiful Gravetye Manor Hotel,West Sussex – awarded the Condé Nast JohansensBest Countryside Hotel 2014. As a bonus, travel instyle for the two days in an Audi of your choice (upto an A8), lent courtesy of Audi Crawley.Donated by Gravetye Manor, Andy Donaldsonand Audi Crawleywww.crawleyaudi.co.uk

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07. An original signed MAC cartoonA rare opportunity to have your very own original,and signed, cartoon by one of Fleet Street's mostfamous cartoonists - MAC, of the Daily Mail.Donated by MAC (Stan McMurty) and ElizabethVaughan

08. Up the Gunners!A signed first team squad Arsenal FC football, includingcertificate of authenticity.Donated by Arsenal FC

09. To Dare is to Do!Tottenham Hotspur FC pennant, signed by membersof the current squad. Plus certificate of authenticity.Donated by Tottenham Hotspur FC

10. Say ‘Cheese’Lifestyle Photography Shoot by Annie Armitage, oneof the top family and teenage photographers in theUK. Package includes a pre shoot visit, 1 to 2! hourshoot - at your own home plus a visit to a favouriteoutside space within 2miles of home. And a bespokeframed 10x8 inch print worth £220 too!Donated by Annie Armitagewww.anniearmitage.com

SILENT AUCTION11. Hold your head up high Liverpool fansA Liverpool FC football shirt signed by the players,with a certificate of authenticity.Donated by The Liverpool FC Foundation

12. For the Road RacerLarge canvas signed and personalised just for you,with amessage of your choice, by Britishmotorcycleracing star and immensely popular TV presenterGuy Martin - currently starring in the thrilling ‘OurGuy in India’ on Channel 4.Donated by Rob Kemp and Guy Martinwww.guymartinracing.co.uk

13. Take That!Two places on the band’s guest list for the sell-outTake That tour at the O2 on Saturday 6th June. Plustheir latest album, III, signed by Mark Owen.Donated by Mark and Emma Owen

14. And they’re off !Two hospitality tickets to Aintree races on LadiesDay - Friday 10th April; badges, tickets, 4 coursemeal, race card, complimentary bar and afternoontea. An unmissable event in the diaries of allfashionistas and style lovers!Donated by Alex Royall and BMW

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15. Going for a steal!Grand Theft Auto V package – GTA V PS4 gamesand limited edition vinyl soundtrack. Plus a greatbag of goodies from Rockstar Games; RockstarBarbour jacket, Rockstar bomber jacket, Rockstarrucksack and Maxpayne 3 t-shirt.Donated by Rockstar Games and Tim Bates

16. Southern ComfortSay goodbye to the winter with a package of his &her comfort treats. An hour’s massage at TanaRamsey’s All About the Girl, Northcote Road; hairrestyle, cut and blow dry at Anthony Laban AtHome, Bellevue Road; shave and men’s cut atAnthony Laban’s swish new barber shop, offNorthcote Road; facial at Tranquility, Bellevue Road;and 2 personal training sessions at home or in thepark, with movement consultant and personaltrainer Henrique Coimbra, MSc, ACSM-CPT.Donated by All About the Girl, Anthony Labanand Henrique Coimbra

17. Get your shutter fingers ready…London at Dawn - photographyworkshop. A thrillingexploration of London’s mysteries and secret viewswith Anthony Epes, a photographer who for over 10years has been bringing “a painters eye to the wakingcity” (Nick Curtis, The Evening Standard).Donated by Anthony Epes and Diane Birdwww.anthonyepes.com

18. This ‘Saint any old shirt!Southampton FC shirt signed by the current squad.Plus a Saints’ scarf and signed 2008 football thrownin for good measure.Donated by Southampton FC Saints Foundation,Tom Barrett and Kerry Lampard

19. Billie Jean King shirtShirt signed by the legendary former World No. 1and winner of 39 Grand Slam titles. A treasure froman icon.Donated by Jo Martin

20. Johnnie Walker Directors’ Blends PrivateCollectionPresented in a dark blue bottle, the Johnnie WalkerPrivate Collection is a blend of Jim Beverage's 29private reserve "experimental" casks that produces aunique smoky blended whisky. A rare and limitededition expression, with each bottle beingindividually numbered between 1 and 8,888.Donated by Catherine James

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RAFFLE‘Blue Glass’ still life (original artist’s proof), by

Darren BakerDonated by Darren and Abigail Baker

An overnight stay, including breakfast and dinner,in a suite at Tynley Hall, including champagne,

flowers and £100 worth of spa treatmentsDonated by Jane White, Alphabet

London Road diamond letter pendantDonated by Ed Adams

www.londonroadjewellery.co.uk

45 minute Annie Armitage photo shoot inRichmond Park

Donated by Annie Armitage

Night at The Glove House boutique B&B,Woodstock, OxfordshireDonated by Caroline Frostwww.theglovehouse.co.uk

KindleDonated by John Lewis and Chris May

£100 John Lewis voucherDonated by Philip McVeigh

BMW ride on children’s car and voucher forBeaulieu Motor Museum

Donated by Gina Finn and Alex Royall, BMW andBen Wanklyn, Beaulieu National Motor Museum

8 Vue Cinema ticketsDonated by Kathryn Jacob, Pearl and Dean

Sony headphones : MDR-V55Donated by Rob Meakin, Sony

Myotubular myopathy is a rare genetic condition, mainly affecting boys, which causesprofound muscle weakness. In the baby with myotubular myopathy, the myotubularinprotein is missing, which means that the muscles remain in a very early stage ofdevelopment. So as well as causing general muscle weakness, many sufferers needmechanical ventilation to stay alive and need to be fed straight into the stomach via agastrostomy. Many are medically very fragile and need nursing care 24/7 for at least thefirst few years of life. Myotubular myopathy is life threatening in the extreme - 8 out of 10of these boys die before their first birthday and only 1 in 100 makes it to 10 years old. Thesechildren are so frail that even a simple childhood cold can be fatal, simply because theirmuscles are so weak that they can't even cough effectively.

There are great advances in the field of muscle disease but rare diseases like myotubularmyopathy continue to find it exceptionally hard to attract mainstream funds. Treatmentsor a cure can lag literally years behind the medical possibilities when a child suffers froma rare disease. Hence the Myotubular Trust was created - its goal being to fund researchthat would simply 'find strength' for these children.

Raising funds serves two purposes:- first, it pays for the actual research; second, the veryexistence of a specific fund where once there was little possibility of research being paidfor, inspires new academic thinking.

To date nine leading edge research projects have beenfunded in international world-class laboratories, andsubstantial scientific advances are being made in thisfield.

We are confident that with your help, our goal of findinga treatment or cure is within reach. So one day, adiagnosis of myotubular myopathy will not mean nearlycertain death for a child.

We look forward to that day with great joy.

FINDING STRENGTH

Tom Lennox21st July 2003 – 29th May 2007

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Take That album, signed by Mark OwenDonated by Mark and Emma Owen

2 consultations and 10 sessions at Movers &Shapers, Balham

Donated by Movers and Shaperswww.moversandshapers.co.uk

Package of books signed by David WalliamsDonated by David Walliams

Box of the renowned ‘Bar Keepers Friends’cleaning products

Donated by Johanna and Richard Daviswww.kilrock.co.uk

Gift basket from Kiehl’sDonated by Kiehl’s, Northcote Road

A day pass for two to the Harbour Club, ChelseaDonated by David Lloyd Leisure

Book signed by Graham NortonGraham Norton

4 paddock enclosure tickets forBangor-on-Dee racecourseDonated by Toni Abram

Book bundleDonated by Rowena Kirton, Random House

Bottle of champagneDonated by Majestic Wine

Founding Patron: Professor Victor Dubowitz Emeritus Professor of Paediatrics, University of London and President, World Muscle SocietyScientific Advisor: Professor Francesco Muntoni, Professor of Paediatric Neurology, Imperial College, London

Charity number 1137177

We would like to thank:Ed Kemp, Angela Newman, Gary Beck, Ilaria and Marco Gregotti, Johanna Martin, Alison Siddiqui,Lizzie Geffen, Noni Needs, Maria Clancy, James Rosling, Keimia Alikhani and the Capgemini crew.

With very special thanks:Jane Ellison MP and Justin Webb for their kindness tonight.

Professor Francesco Muntoni for his unending support.

Savills for generously paying for tonight's raffle ticket and catalogue printing.

Richard and Tracey at Nightingale Austen Designs who have helped us with all our design from day one, andpresent the charity so beautifully. www.naduk.com

SCHEDULE6.00pm

Pre-Booked Tours Commence

7.00pmTerrace Rooms, Main Reception Starts

8.45pmRaffle Prizes Drawn

9.00pmAuction Closes

9.30pmClose

Speakers:Justin Webb

Today Programme Presenter, BBC Radio 4

Jane EllisonMember of Parliament

Professor Francesco MuntoniProfessor of Paediatrics, Imperial College

and Head of Dubowitz Neuromuscular Centre,Great Ormond Street Hospital