In Touch Magazine

intouchfor people whoseskin doesn’t workwe do

The newsletter for people living with EBSpring/Summer 2011

Young fundraisers cyclefor DEBRA - See Page 12

Our Royal Patron- See Page 3 www.debra.org.uk

DEBRA is grateful for the continuing support of Mölnlycke Health Care in sponsoring this newsletter.

Plus:• We have a new

DEBRA logosee page 2

• Lifeline Appealtops £30,000

ADULTS’WEEKEND IN

MANCHESTERfull story on page 8

93004 Debra In Touch Spring 2011:Debra In Touch Autumn 09 6/5/11 13:38 Page 1

for people whoseskin doesn’t workwe do

As you will see from the frontcover, we have a new DEBRAlogo, which we hope will attractattention and make peoplestop, think and question. It alsocomplements the DEBRAInternational logo (below right).

Debra was the daughter of ourcharity’s founder, Phyllis Hilton.Debra had RecessiveDystrophic EB and it was thelack of professional and publicawareness of EB that impelledPhyllis to form the original groupwhich grew into the present dayDEBRA, both in the UK andcurrently 40 countries aroundthe world.

New DEBRA Logo

Welcome to the Spring/Summer 2011 editionintouch

We have a vision of a worldwhere no one suffers from thepainful genetic skin conditionEpidermolysis Bullosa (EB).

Until that day, we offer specialistcare to those who need it.

We give support to peopleand families affected.

And we provide real hopefor the future by fundingpioneering research whichwill one day find a cure.

DEBRA’spurpose

01 In Touch Spring/Summer 2011

DEBRA’s Annual Members’ Day on Saturday 21st May at theSt John’s Hotel, Solihull.

Children’s programme starts at 10.30am leaving the hotel at11.45am for escorted visit to Sea Life in Birmingham.

Crèche by ‘Tinies’

For full details and bookings contact Cynthia or Dawn on01344 771961

Don’t forget


Royal patronage for DEBRADEBRA is honoured and delighted to announce that HerRoyal Highness The Countess of Wessex has accepted aninvitation to become Patron.

In 2010 The Countess visited a DEBRA charity shop inWhitburn whilst on a visit to the West Lothian area ofScotland and was warmly welcomed by the shop's staff andvolunteers. DEBRA was also pleased to welcome Her RoyalHighness to a fundraising day last summer at BearwoodLakes Golf Club in Wokingham, Berkshire. DEBRA memberEmma Turner presented the Countess with a bouquet.Sadly, Emma passed away in December.

Ben Merrett, Chief Executive, said, “It is a great honourfor DEBRA to have the support and patronage of theCountess of Wessex. We are delighted that our workon behalf of people with EB has been recognised byHer Royal Highness and it is a tribute to our staff andvolunteers that the invitation to become our Patronwas accepted.

Support from the Countess will help us to continue raisingawareness of EB. Our work, to offer specialist care andgive support to the people and families affected, continuesunabated as does our search for effective treatments andultimately a cure for EB.”

The Countess of Wessex is also pictured here with DeanAnderson (and DEBRA teddy!) in 2007.

In Touch Spring/Summer 2011 02

DEBRA’s November Lifeline appealbroadcast on BBC1 has now raisedover £30,000. This is a fantasticamount and we are very grateful toour supporters who helped to spreadthe word about it

The programme showed DEBRA'swork through the lives of 2 year oldMason, 8 year old Sohana andDEBRA Trustee Melissa Smith.

BBC Lifeline Appeal tops £30,000Our President Michael Portillopresented the programme whichalso featured DEBRA’s EB nurseconsultant, Jackie Denyer andProfessor John McGrath, whotalked about our research.

If you would like to watch this shortfilm (or make a donation) just log onto www.debra.org.uk and click onthe Lifeline box.


Healthcare Team


Jackie Denyer, EB Nurse Consultant,based at Great Ormond Street Hospitalin London, has been working withchildren and families living with EBfor the past 20 years.

In that time she has been an inspirationto countless people – helping to teachparents, carers and nursing staff howto look after a newborn baby with EB,making home visits all over the country,supporting children through toadulthood, comforting many parentsand families along the way – and somuch more.

In February 2010, Jackie was inductedto the Nursing Times Hall of Fame at StBartholomew’s Hospital in London forher contribution to the Management ofLong Term Conditions. (See In TouchSpring 2010)

Joining Jackie to help celebrate her20 years with DEBRA were other long-serving members of the team, EBNurse Consultant for Adults, Liz Pillay(15 years), Director of Research &International, John Dart (22 years) andSocial Care & Membership Manager,Cynthia Richards (18 years).

Jackie Denyer celebrates 20 years with DEBRA

In October 2010 Jackie Denyer and LizPillay were presented with the UrgoFoundation Award to write ‘Best PracticeGuidelines for Woundcare in EB’. Thisproject will be very much a collectiveeffort drawing on EB expertise worldwideto write guidelines to assist EB cliniciansand individuals with EB in makingdecisions about wound management.

Apart from clinicians they hope toharness the wealth of experience inthe EB community in drawing up theguidelines, which it is anticipated willbe a global resource.

Urgo Foundation Award presented to DEBRA

Jackie Denyer

Above: Jackie, Liz, John & Cynthia–75 years between them!



Emma Waterworth, DEBRAChildren’s Nurse, popped into GreatOrmond Street to show off hertwins, Poppy and Joe, born lastSeptember. Emma will sadly beleaving us to be a full-time mum butwe are delighted that Juliette Turnerhas joined the children’s nursingteam working three days a week.She brings a wealth of dermatologyexperience from her years at GOSH.

Changes at Great Ormond Street

Sondra Butterworth has joined theSocial Care Team for the North, the areapreviously covered by Linda Thomas.Sondra will be working three days aweek so she will be a busy lady butLinda is kindly continuing to help outwhere needed for the time being.

Introducing Sondra

Hello, I’m Sondra Butterworth - I beganmy professional career as a generalnurse and after a number of years Idecided to study for a Degree andMaster’s Degree in psychology andbecame very interested in thepsychological effects of ill health anddisability on people and families. I wasvery interested in education, so I alsoqualified as a teacher in adult education.

A number of years ago I decided tochange direction and worked in thecommunity for Social Services. My roles

Social Care Manager appointedfor the North of England

developed into training and educatingstaff and carers and completing riskassessments for disabled people,particularly around moving andhandling and the provision ofcommunity equipment.

I’m delighted to be working for DEBRAalongside the excellent teams hereand I’m looking forward to helping tosupport people who are living with theeffects of EB.

Sondra can be contacted on07920 231271

Lynne Hubbard, Dietician forAdults with EB, won first prize inthe poster competition at theInternational EB Conference inChile last Autumn. Lynne did a lotof work in her own time to producethe data, which described an on-going project which she is veryexcited about, Study of quality oflife in adults with RDEB living with agastrostomy. This was the first timethat an EB dietician won such anaward and we are thrilled that oneof our ‘team’ has been recognised.

Leigh Cotton, EB podiatrist fromSolihull came second.

Prize forDEBRAdietician

Joe with Sonia AmaPoppy with Juliette Turner

We are delighted to welcomeDebbie Johnston to the AdultNursing Team. Debbie, whojoined DEBRA in January, is ourAdult EB Nurse Specialist coveringScotland. Her working days are:Wednesday, Thursday and Friday.

Read more about Debbie and theScottish team on page 5

Adult EBNurseSpecialistin Scotland

Sondra Butterworth

Juliette Turner

Lynne Hubbard



DEBRA Scotland

Debbie Johnston

Hello. My name is Deborah (Debbie)Johnston. I qualified as a registeredgeneral nurse in 1992 and havepredominantly worked in Dermatologyfor the past 14 years. I have run anurse led service for chronic diseasemanagement and experienced manyother specialities within an outpatientsetting. I studied at Stirling Universityto achieve a Dermatology foundationModule for Health Professionals.

I live on the Southside of Glasgowwith my husband and children (not

Deborah Johnstonforgetting the 2 dogs, cat, rabbit,hamsters and fish!) In my spare timeI enjoy gardening, spending time withmy family, going on holiday and eatingout. I am delighted and honoured tobe the new adult EB nurse specialistfor Scotland.

Debbie can be contacted at:

Hamilton Office: 01698 477777

Mobile: 07557 037598

Email: [email protected]

Pippa Millican

Pippa’s contact details are:

Hamilton Office: 01698 477777

Mobile: 07917 230105

Email: [email protected]

Paediatric EBNurse Specialist

The Scottish Governmentremoved prescription chargesaltogether on 1 April 2011.

Free NHSPrescriptions

Pippa Millican

Just a quick reminder that if you’re moving home or changing telephone numbersplease keep us informed. Let the clinic that you are attending know too.

DEBRA Scotland Health Care Team 01698 477777

Aberdeen Children’s Hospital Dermatology Outpatients 01224 552667

Edinburgh Royal Infirmary Dermatology Outpatients 0131 536 2059

Glasgow Royal Infirmary Dermatology Outpatients 0141 211 5546

Ninewells Hospital Dermatology Outpatients 01382 633873

Yorkhill Hospital Dermatology Outpatients 0141 201 0038

Useful Numbers



Patient Day in ChessingtonThe Adults’ and Children’s Nursing Teams held a Patient Dayfor parents, carers and patients at the Holiday Inn inChessington, Surrey, on Saturday 5th March.

The healthcare companies represented were exhibitingproducts mainly new to EB patients, so they were very keento meet the people who would be using the products andtalk to them about their needs.

Howard Cairns from Movianto UK said, “Attending theDEBRA Patient Day at Chessington was both humbling andinspiring. The opportunity to talk to patients and their families

directly really helped give us insight into how we can try andhelp, and inspired us further in our efforts to develop newtechnology which can make a difference. The positiveattitudes from all the patients and their families was amazing;and the amount of gratitude they feel to the DEBRA nurseswas obvious from every conversation. We hope we can domore and more to help in future.”

During the afternoon many families took the opportunityto visit Chessington World of Adventures, which wasconveniently situated next door to the hotel; the weatherwas cold but they all came back looking very happy!

Heart of England NHS Foundation Trust

Epidermolysis Bullosa Service at Solihull Hospital

As part of the UK EB network,Solihull provides support and medicalcare for patients from the Midlands andthe North. The weekly clinicsare supported by a ConsultantDermatologist, a Consultant in PainManagement, a Consultant ClinicalPsychologist, a Senior Dietician, aConsultant gastroenterologist,podiatrist, orthotist and nurses togetherwith other specialists as necessary.

Whenever possible a one stopappointment is arranged but the nursingstaff also regularly provide communitycare at home giving support and adviceas needed, as well as accompanyingpatients to other hospital appointments.

If you, or anyone you know, has EB andwould like to be seen by the team atSolihull Hospital, please ask your GP torefer you to:

Dr Adrian HeagertyDermatology DepartmentSolihull HospitalLode LaneSolihullB91 2JL

Or alternatively contact:Tracy Adni – Lead EB Nurse on07846 986 987 [email protected]



Below: Conference delegates led by Prof Celia Moss, centre front

Birmingham Children’s HospitalBirmingham Children’s Hospital has recently hosted aninternational two-day conference, “Practical Paediatric EBfor Professionals”, for medical professionals from all overthe world caring for children with EB.

The BCH team, led by Professor Celia Moss, has beencaring for local children with EB since 1995 and in 2002joined with Great Ormond Street Hospital to provide anational service for children with EB.

The dedicated team Birmingham Children’s Hospital hasdeveloped several innovations in the field of EB including:

• a novel EB severity score that has already beenaccepted and published in an international dermatologyjournal

• a purpose built database which will help to give anoverall picture of EB in the UK

• a method using a skilled dressing technique whichparents can carry out at home for limiting scarringof fingers.

Two years ago the team set up an annual EB Course forProfessionals; advertised mainly through the EB medicalcommunity, word has spread and this year the team wasoverwhelmed by the response, with all places booked anda waiting list for next year.

Professor Moss said: “We know that children with EB insome parts of the world have very poor healthcare, so thiscourse is an important way to share knowledge morewidely. At the same time we learn a lot from delegates fromother EB centres”.

The thirty delegates included nurses, doctors, dieticians andother health professionals from Austria, Australia, NewZealand, Ireland, Croatia, Slovenia and South Africa. Someare hoping to emulate the Birmingham Children’s Hospitalservice in their own countries, and the team will remain incontact with them. The course covered psychologicalproblems and pain management as well as skin care,complex hand surgery and genetics. For many delegates,the most moving and informative session was a discussionwith two remarkable young patients, who spoke clearly andconfidently about living with EB every day.



Manchester extends a huge welcometo our Adults’ Weekend Group

Thanks to the generosity of the staff at the Palace Hotel inManchester and the hard work of our Adult Nursing Team,the weekend break for adults with EB was once again agreat success.

Arriving at the hotel on Friday evening, the guests weretreated to a delicious fruit cocktail before dinner in a privatedining room. On Saturday we made our way to theglamorous Harvey Nicholls department store where thefashion advisers talked us through the latest trends andhow to replicate them shopping in the ‘high street’ (noHarvey Nicks prices for us!). They kindly let the group trywhatever they wanted, with much hilarity as well asadmiration for Maxine looking stunning in fake fur andthigh length boots!

After a few turns on the Manchester Wheel followed bylunch, everyone dispersed to either shop or prepare forthe BIG event in the evening – the Annual DEBRA Dinner,orgainsed by Tony Eckersall, Regional Fundraising Manager.The evening had a 60s theme and was attended by stars ofCoronation Street and Hollyoaks. The group is picturedabove – all looking very glamorous, ready for a fun evening.DEBRA nurse, Jennie Hon and weekend organiser, CynthiaRichards, decided to come in full 60s swinging style!

After recovery time on Sunday morning, we all headed homewith some very good memories! Above: Jennie & Cynthia – back to the swinging 60s!



Welfare ReformAs members are probably aware the Welfare Reform Billwas introduced in the House of Commons on 16 February2011. The major proposal for reform is the introduction ofa new benefit, to be known as universal credit, which willreplace existing in and out of work benefits. The benefitsreplaced will be:

• income-based jobseeker’s allowance (JSA)

• income-related employment and support allowance (ESA)

• income support (IS)

• housing benefit (HB)

• council tax benefit (CTB) - this may be replaced by a newscheme, administered by local authorities rather thanuniversal credit.

Personal Independence PaymentThe personal independence payment (PIP) will replaceDisability Living Allowance from 2013-14. It will have twocomponents:

• daily living component

• mobility component

Each component has two rates, standard or enhanced,depending on the severity of the condition.

People with a terminal illness (same definition as for DLA)automatically receive the daily living component enhancedrate and will not have to satisfy the period condition for themobility component.

PIP will not be paid once someone reaches the age of 65 orpensionable age, whichever is the higher, though subsequentregulations may allow someone to stay on PIP if theyclaimed before the age cut off point.

Universal creditUniversal credit, which will be paid to working age peopleand, depending on the claimant’s circumstances, willinclude a standard allowance (to cover basic living costs)along with additional elements for responsibility for childrenor young persons, housing costs and other particularneeds. Universal credit will be paid to people both in and

Other benefitsThere will also be changes to a number of other socialsecurity benefits, including the ending of discretionarypayments under the social fund. This means thatcommunity care grants and crisis loans other than thosecurrently available to applicants pending payment ofbenefit (alignment loans) will cease. Instead, in England,

new locally-administered assistance will be providedby local authorities. In Scotland and Wales theDevolved Administrations will decide the mostappropriate arrangements for assistance. Budgetingloans and alignment loans will be replaced by paymentson account.

• child tax credit (CTC)

• working tax credit (WTC)

The Welfare Reform Bill also makes provision for a newbenefit, personal independence payment, which will replacethe existing disability living allowance (DLA).

out of work, replacing working tax credit, child tax credit,housing benefit, council tax benefit, income support, income-based JSA and income-related ESA. It will provide supportfor people between 18 (or younger in specific circumstances)and the age at which the claimant becomes eligible for statepension credit.



Employment & Support Allowance (ESA)reassessment processBetween October 2010 and Spring 2014 customers whoreceive Incapacity Benefit, Severe Disablement Allowanceand Income Support paid on the grounds of illness ordisability will be assessed for Employment and SupportAllowance.

The DWP will write to customers when their benefitbecomes due for reassessment to tell them about thechanges. Customers will then be sent a medicalquestionnaire to complete and return and this will be used todecide if they need to attend a Work Capability Assessment.It is important that customers provide as much detail as

possible when completing the questionnaire as this will beused to help decide if the customer is entitled to ESA.

If they need to attend an assessment, the customer will bephoned to arrange an appointment. They will not need toattend an assessment if a decision can be made on theinformation provided on the medical questionnaire.

For more detailed information visit:http://www.disabilityalliance.org/welfarereformbill.htm orspeak to your Social Care Manager. DEBRA is a member ofthe Disability Alliance and is working closely with them.

Melissa Smith and Lucy Glennon, bothof whom live with severe EB, have beenblogging about the Welfare Reform Bill,as it progresses through Parliament.

DEBRA Trustee, Melissa has beenwriting on the Joe Public blog page ofThe Guardian, under the heading:‘Disability is not a lifestyle choice’.

Lucy has also blogged on the Guardianwebsite, under the heading ‘The workcapability assessment is a genuinesource of anguish’. Lucy has alsorecently written on the subject of welfarereform for Channel 4 News.

www.guardian.co.ukwww.channel4.com

DEBRA bloggers

Melissa Smith Lucy Glennon

Help us to help youIf you attend one of the four EB centres - Great OrmondStreet, Birmingham Children's Hospital, St Thomas' orSolihull, please help us with the survey below, which is partof an EU-funded project looking at Quality of Care andService for People with Rare Diseases. Because it is a pilot,we are only doing it in limited areas right now, but if thisworks in improving care for the patient, EURORDIS mayopen it up on a wider level.

So, please go to the link athttps://www.surveymonkey.com/s/patientsandrepresentatives

Personal data will be kept strictly confidential and onlycompiled data will be discussed at any time. if you have anyquestions please contact John Dart on 01344 752708 oremail: [email protected]



FundraisingThanks to everyone who has helped raise vital funds for EB research and DEBRA services for people living with EB. We knowit is tough to compete in any sport but congratulations to those who do so despite their EB. Here are just some of the thingsyou - and other DEBRA fundraisers - have been doing.

Silverstone Half MarathonI have EB Simplex - blistering of thehands and feet only! The condition hasbeen passed down through my dad’sside of the family. For a long time Ihave wanted to do something to raisemoney for DEBRA, so I opted to runthe half marathon. I knew this wasgoing to be a struggle for me, as in mytraining up to the event, I onlymanaged to run 8 miles before gettingblisters on my feet, and this was inclose to freezing temperature. The lastrun I did prior to the race was a fourmile run and I had blisters on my feet!

On the day, after five miles I could feelthe blisters developing on the balls ofmy feet, which was painful and veryannoying. Without the support from myrunning partner, Lee Thompson andmy family and friends who came towatch, I’m not sure I would have beenable to complete it. After ten miles Iwas probably at my worst – feet allblistered and legs starting to feel twice

Above: Tom Edgar, Sam Edwards, Carl Hills, Paul Hetherton andAndy Maskill (pictured) raised over £2000 on their charity bike ride.Tom and his daughters, Ruby (4) and Daisy (2) all have EB.

Christopher Saunders lives inthe Rhondda Valley, SouthWales and has a mild form ofDystrophic EB. Over the pasttwo years he has been weighttraining and last Septembercompeted in a nationalbodybuilding competition,having asked people to sponsorhim during his gruelling tenweek training period, whichentailed a strict diet and manyhours of weight lifting andcardio sessions.

Chris says, “ I have alwayswanted to raise money for, whatto me, is a charity close to myheart and I believe this was theperfect opportunity to do so.”

We are delighted to say thatChris won his competition andraised over £300 for DEBRA.

Bodybuildingfundraiser

Christopher Saunders

as heavy. But we battled it and forsome reason over the last ¼ mile wedecided to really put in what felt like asprint and a good running technique,but was no doubt nothing like it! Weran it in 1 hour 40 minutes, beating ourtargeted time of 1 hour 45 mins.

Lee Togwell



Events do not always have tobe big to raise DEBRA’s profileand funds for EB research andservices

Sam Grant (9), Thomas Lock (8)and Katie Hayes (8) – pictured onthe front cover - all cycled agruelling 13.5 miles around BewlWater in Kent. Sam’s sister Laurenhas EB and the young trio raisedan amazing £874.50.Congratulations and many thanks.

Barbara Ives from Nottinghamraised £1100 from a number ofevents and we are very grateful toher for her efforts.

Pauline Townley, from Stoke-on-Trent,and several members of her familyhave EB Simplex, so when a non-uniform day for charity was proposedat her granddaughter Courtney’sschool, she was quick to suggest thatthe proceeds went to DEBRA. £100was raised from a £1 donation perstudent and Pauline was invited toschool to receive the cheque.

Although Lee, who joined the Army at17, would rather be at home, he getsa boost knowing that the people backhome are supporting the troops out inAfghanistan.

Clough Hall TechnologySchool Non-Uniform Day

Support fromSoldier, LeeWarrant Officer (Class 2) Lee Brownmay be serving in Afghanistan, but thathasn’t stopped him from raising moneyfor his favourite charities. Lee, hasbeen spending his spare timeorganising a half marathon at CampBastion, Helmand, which turned outto be a huge success.

Lee was one of 422 runners whocompleted the challenge and helpedto raise £4,000 for DEBRA, the RNIBand the Royal British Legion. DEBRAis close to Lee’s heart as his friend,Heather Skerry, from Swindon, has EB.

Lee Brown

Paul Morrissey, whose daughterhas EB Simplex, took on what hedescribed as ‘the scariest andhardest challenge’ – a ‘Strictly’style dance off with a professionalballroom dancer. Paul and his wife,Lorraine both danced a tango anda samba with their professionalpartners. Money was raised bypeople paying per vote for thebest couple.

Paul says the dance off was agreat success, having raised about£2200 from sponsorship on thenight, £355 from the raffle, £260 inaudience votes and £230 fromtickets. They are trying raise yetmore money by offering to chargepeople to watch the video!

StrictlyDEBRA

Fearless Jake!On the 23 July, Jake White fromRingwood, will be spending his 16thbirthday raising funds for DEBRA.Fearless Jake is planning a sponsoredtandem sykdive from 13,000ft atNetheravon near Salisbury, home ofthe Army Parachute Association.Jake’s inspiration is his brother - twoyear old Mason White, who has severeRDEB and featured on DEBRA’sLifeline appeal in November.

Jake says that Mason has taught somany people never to give up hope.

“Mason is such an inspiration toeveryone who meets him, and bringsnothing but joy and happiness to us all.

Mason with Dad, Rod, and Jake

So to support Mason, and others likehim, I want to raise funds for DEBRA.You can’t do a skydive until you’re 16so that’s why I’m planning it for mybirthday.”

“I’d be grateful for any donations,please go to my Just Giving page, it’sso easy to do and would mean somuch to me and my family”:http://www.justgiving.com/Jake-White4



The walk will start from HMSWellington (opposite Temple tubestation) and cover 5 bridges(Blackfriars to Tower Bridge) andback again but for those who areup for the challenge a further 3bridges can be crossed (Waterlooto Westminster) and back again,finishing back at HMS Wellington.It will include a wheelchair friendlyroute. There will be a £10registration/admin fee and wehope participants will be able toraise a minimum of £50.00sponsorship.

Blackfriars to Tower Bridge(walking over each bridge twice)will take approximately 2½ hours.Waterloo to Westminster will takeapproximately 1½ hours.

Why not join the DEBRALondon Bridges Walk- 26th June 2011

Wherever you are on the walk, it isonly a short distance back to theHMS Wellington where DEBRA willbe based all day and tea andcoffee will be available tosupporters. Please note that,unfortunately, there are six stepson to HMS Wellington but the shipitself is wheelchair friendly.

Routes/maps will be provided(included wheelchair friendly (ie nosteps) on the day. We areencouraging everyone toarrive/start between 10.00 and12.00 but we can be flexible.

To register please contact JohnParker [email protected] 07786575513/01707879887

Other DEBRA EventsWould you, or someone you know, liketo take part in one of our forthcomingevents?

DEBRA Golf SocietyContact: [email protected]

DEBRA Shooting SocietyContact: [email protected]

adidas Women’s 5k11 September 2011Distance: 5k, Entry fee: £15

As long as you’re female this event isopen to everyone, no matter yourfitness level! Whether you run, jog,walk, push a pram or wheelchair, youwill be doing so with thousands ofother women.

The adidas Women’s 5k was a greatsuccess in 2010 with over 80 DEBRAsupporters taking part. Two women

even took on the 5k course in veryhigh heels! The groups together raisednearly £13,000 for the charity.

It is a fantastic fun filled day giving youthe chance to take on a challenge andhelp raise awareness and funds forDEBRA. Join the DEBRA Ladies!

Faye Edwards plans to do theadidas Women’s 5k this year. Fayehas Dystrophic EB and this is hersecond 5k race.

Great North Run18 September 2011Distance: 13.1 milesEntry: Free, Pledge: £500

This is one of DEBRA’s most popularruns after the Virgin London Marathonand is the most iconic half marathonin the world. The course will take youthrough the vibrant city of Newcastle

and finish on the coasts of SouthShields.

Great South Run30 October 2011Distance: 10 miles (16k)Entry: Free, Pledge: £300

The Great South Run is Europe’s leading10 mile road race and one of only ahandful of UK based races to hold theprestigious IAAF Gold label standard. Itis a fantastic event. The course will takeyou through the streets of Portsmouthand pass historic sites such as the HMSVictory and HMS Warrior. With over20,000 runners taking part why not jointhe DEBRA team!

To take part in these eventsor for further information,contact: Hannah Weston:[email protected] telephone 01344 771961

Julia Molyneux carried hercollection bucket round the 13.1mile course through Reading onSunday 13th March. Julia, in hereye-catching outfit, was caughton camera by Mark Barton fromDEBRA head office, a keenamateur photographer!

Reading HalfMarathon

Julia Molyneux



Laura PrattIn January, Laura retired fromDEBRA having joined our fundraisingdepartment almost eleven years ago,when we had just two fundraisers.Laura has been responsible forfundraising in the South, and hasespecially enjoyed working with rotaryclubs and schools.

Laura said,”I have loved working atDEBRA and have been privileged towork with some amazing familiesand great work colleagues andI’m delighted that I will continueto support DEBRA as a volunteerspeaker. DEBRA and our membersmean a great deal to me and I am so

Laura Pratt

John ParkerGreater London, Kent, East Anglia:01707 879887Email: [email protected]

Tony EckersallNorth, North Wales:0161 286 5340Email: [email protected]

Jaye HamiltonScotland:01698 424210Email: [email protected]

Chris Clarke– Head of Regional FundraisingEmail: [email protected]

RegionalFundraisingManagers

How I raised £10,500for DEBRA running theLondon Marathon

Lots of people do sponsoredphysical challenges for charitynowadays, so most people getasked frequently for sponsorship.Conscious of this, I set out to createa story around my fundraisinghopefully to get people enthusiasticabout supporting me.

It seemed to me (and it might justbe me!) that there were two hurdlesto getting sponsorship:

1. Whilst there were a lot of peopleI was comfortable asking tosponsor me, there were also a lotwho I felt awkward about askingbut if I wanted to raise a lot ofmoney I needed to ask a lot ofpeople for their support.

2. I knew from experience that beingasked to sponsor other peoplewas sometimes uncomfortable forme and I didn’t want to put otherpeople in that position.

In the end the story I came upwith not only seemed to get peopleinterested in what I was doing andenthusiastic about helping me raisethe funds but it also overcame thesehurdles. As a marathon is 26 milesand 385 yards I decided to try andraise £26,385 by finding 26,385people to sponsor me £1. I figured Icould ask anyone for a £1 and thatnobody would be offended!

If I am absolutely honest, I don’t thinkI really thought I would ever succeedin raising £26,385 and obviously Ididn’t raise it all, but having this storyand goal meant I raised over 3 times

what DEBRA had requested whenI was given my place. Result!

One thing I did straight away was setup my Justgiving page and put a linkto it with a short note about what Iwas doing in my email signature sothat everyone who got an email fromme in the following six months knewwhat I was doing.

Having created my “story”, I realisedI would need to get some mediasupport if I was to stand any chanceof getting the message out as,unsurprisingly, I didn’t personally know26,385 people! An email to a few of

Claire Burchem

pleased that I shall still feel part of theorganisation. Thank you to everyonewho has made the past eleven yearsso special for me.”



the local papers and local radiostations secured me over the nextcouple of months a short piece in theYorkshire Post, a two page spread inthe local evening paper and a slot onlocal BBC radio. If I am honest, Idon’t believe anyone spontaneouslysponsored me from reading orhearing about what I was doing butwhen I approached people face toface or by email and asked for theirsupport, lots of people told me theyhad heard or seen what I was doingand stuck their hand in their pockets.

If you can ask a celebrity to have apicture taken with you, the localpapers could use the picture helpingto get more coverage. So, have areally good think about who you knowand who they know.

A huge part of my success relied onnot just persuading people to sponsorme personally, but more importantly,getting them to spread the word forme to their friends, family, employees,colleagues, etc. It was thanks to somany friends and family who tooksponsorship forms out and about onmy behalf (and persuaded others to)that I managed to raise so much. Tomake it easy for them, I put apersonal message onto thesponsorship form that DEBRA sentme and attached a leaflet fromDEBRA to each one so that if anyone

wanted any more information, myfriends and family had it to hand.

Don’t be afraid to ask people morethan once to sponsor you. Manypeople intend to support you butforget to get around to doing it. 3 timesin the run up to the London MarathonJustgiving had a competition to win acash prize for the person who couldget the most people to sponsor themby a set date – I emailed people whohadn’t sponsored me yet and toldthem about this and asked them tosponsor me online by the deadline andhelp me win! I didn’t win but I did getsome more donations.

If you are internet savvy you may wantto consider creating a blog wherepeople can follow your training andfundraising progress. I put the blogaddress in my email signature withthe Justgiving link and was amazedhow many people visited it. I’m notpromoting it as a great example butif you want to see what I did to giveyou some ideas, you can visithttp://www.26385vlm.wordpress.com

As well as asking individuals forsponsorship, I did a few other thingsto top up the pot:

• I contacted some local largecompanies to see if they wouldsupport me. I have to be honest

that this didn’t work as a strategy forme but I do know that it has workedfor other people, so if you have thetime to send out some emails orletters and perhaps more importantlyuseful contacts, USE THEM!

• A bag pack: a friend managedto secure a slot at a localsupermarket to pack bags. We gota slot with very short notice andweren’t able to get a lot of peopleto come and take part in the packingbut even so, in 8 man hours wemanaged to raise £270. It really isas easy as ringing up the localsupermarkets and asking them if youcan come and do it. NB normally youwill have to wait up to 3 months toget a slot so try and ask soonerrather than later.

• Ask local businesses if they willput a DEBRA collecting box on theircounter. For this to really work foryou, you do need to think quitecarefully about which type ofbusinesses have people coming inand spending cash. For obviousreasons, having collecting boxes inshops where people mostly pay bydebit or credit card doesn’t reallywork. It might be worth askingshops if they will also put up aposter for you explaining what youare doing to encourage people toput something in the box.

• Try and create a story if you can about what you are doing and why.It is not unusual to run a half marathon or marathon nowadays sosomething extra to capture the imagination of potential supporters canreally help in generating support.

• Once you have a story, contact all of the local media. They desperatelyneed stories, give them something interesting to report and they will!

• Set up your Justgiving or Virgin Media page up early and put a link to itin your email signature and any social networking sites that you maybelong to. Make it easy for people to sponsor you.

• Ask friends and family if they would be willing to take sponsorshipforms out and about on your behalf – you’ll be surprised how many willbe happy to help you.

• Don’t just think about getting sponsorship, explore all the ways thatyou can get money eg. collecting boxes, bag packs, etc.

Happy fundraising and good luck!

My top

5tips



Talking ShopDEBRA now has around 120 shops the length and breadth of the country, generating around 75% of our gross income.Hopefully, there is one not far from you!

Gift AidA very big thank you to thosemembers and supporters who havejoined the DEBRA gift aid schemewhen donating goods to DEBRAshops, making their donations go25% further.

We are delighted to report that thanksto the generosity of all those whosigned up, last year we raised overhalf a million pounds from Gift Aid, a‘formidable’ amount which will make adifference to nursing care, holistic careand research for EB families.

Maureen Nickson, DEBRA BusinessDevelopment Manager said, “Manypeople are still not aware that if theyare tax payers they can gift aid anydonation, including money raised fromdonated goods given to the charityshops.”

Innovative ideas in the shops

Joining the Gift Aid scheme (it takesjust a few minutes to complete aform) means that for every £1donated (raised from the sale ofdonated goods) DEBRA can claiman extra 25p from the government atno cost to the donor. To comply withGift Aid the donor must have paidsufficient UK tax to cover the amountclaimed ie. 25p in every pound.

This is one way of ensuring that thetax you have already paid is goingto your ‘charity of choice’ enablingDEBRA to continue to fund careand vital research.

If you are thinking of donating toDEBRA in the future (money orgoods) please ask about Gift Aidand spread the word to familiesand friends.

Many shops are now offering a freecollection service for furniture andsmall electrical items. Please visitwww.debra.org.uk to find yournearest DEBRA shop and makeyour donations go 25% further.

For more information pleasecontact Maureen on07585 969 442

Shirley Stonebank, Shop Manager inNorthampton, designs and makesjewellery from a beautiful array ofgemstones collected by her husband,Paul, who has also designed specialstands to display the collection. Eachpiece is unique as the gems are dovaried.

Shirley donates the jewellery to DEBRAand is also able to Gift Aid all themoney raised from sales.

Diane Fletcher, Manager of thePortsmouth Shop has helped getsupport to make DEBRA the charity ofthe Year at the Co-Op Club in the city

Susie Dunstan, Shop Manager inDundee, has come up with a veryunusual fundraising idea; she isgiving her customers the chance tohave ‘15 minutes of fame’ andbecome local celebrities!

Using the window as a stage,customers can sing, dance orpretend to be a mannequin for therequisite 15 minutes! There is no feebut she is asking customers to raisesponsorship.

Thanks to Shirley, Diane and Susie –and all our hard-working shop staffand volunteers.

Shirley Stoneback



In Memory

15/4/94 - 3/3/11

Scott Edward Eley

Scott had a wicked sense of humour; he lived life to thefull and packed more into his life than most people do; healways took everything in his stride and never complainedthat he was in so much pain. These are the recollections ofScott’s parents, Elaine and Frank.

Scott also excelled at school, gaining GCSEs in Maths,English, Science and Graphics. In October 2010 he waspresented with the Matthew Hardy Memorial Trophy forexceptional progress and the Rolls Royce Trophy forDesign Technology. His headteacher, Dr Paul Parkin said,“Throughout his time at Park High School, Scott was aninspiration to pupils and staff. His positive outlook during histime with us is to be commended. Scott showed an eagerkeenness to learn and, despite the pain he suffered, hecontinued to work extremely hard as his condition worsened.Throughout the time we knew Scott, he was never knownto complain and had a ready smile for everyone. His courageand constant cheerfulness in the face of his continuingillness was an example to all and he was a huge creditto the school.”

Scott loved taking part in his family’s big passion formotorbikes and watching grand prix races. As witheverybody he met, Scott touched the heart of champion

Scott Eley

rider Neil Hodgson who was in regular contact with him.He would send Scott helmets and souvenirs form races andonce took him for a spin in a Ferrari.

Elaine said, “EB affected Scott internally as well as externally,so he could not swallow solids – and we could not take himout in the wind as his eyes would blister. The hardest thingas a mum was that I couldn’t give Scott a hug when he wasin pain but he liked to be stroked and have gentle massages.

Scott died at home surrounded by his family and at hisfuneral everyone was asked to wear bright colours tocelebrate his life.

15/09/85 – 19/12/10by mom Jenny

Emma Christine Turner

My beautiful daughter Emma was born on the 15thSeptember 1985 with severe Dystrophic EB.

Emma was always so accepting of her life she achieved somuch and crammed such a lot into her 25 years. She had afantastic sense of humour and such a caring nature. Emmawent through special needs education for the whole of herschool life making many friends along the way and enjoyingthe social scene escorting her friends to the pub for a drinkor two and achieving the qualifications she wanted.

Just a few of Emma’s special achievements, of courseadded to the fact that she played sport for her country, sheflew in Noel Edmunds helicopter, went on the set of Tomb

Emma on her 25th birthday with Jenny



Raider with Angelina Jolie, she kicked Tony Blair in the leg atNo.10 – by accident! She got poked in the eye by PrincessAnne, and got a kiss from Duncan James and Peter Andre.

The last year of Emma’s life has to be put down as her bestyear. In October 2009 Emma was given the key to her ownfront door of her adapted new home after a six year wait.On the 24th November 2009 after choosing carpets, colourschemes and furniture she moved in and her life wascomplete. She was kept very busy on a daily basismanaging her own care package and looking afterhousehold tasks. Emma spent her first Christmas in herown home. In February 2010 Emma & Liam her boyfriendre-kindled a previous relationship from college – they fell inlove again and enriched each others lives. In the meantimeEmma continued with her England competitions and trainingin boccia and thoroughly enjoyed the tremendous friendshipsshe was able to maintain over the years.

On Saturday18th December 2010 I took Emma into hospitalby ambulance with breathing difficulties and sadly she never

recovered, 30 hours later we watched her take her finalbreath. Her passing was so sudden the shock is immense.

Emma was a beautiful, courageous, determined andexceptionally brave young lady, possessing a tremendousinner strength. She never wanted sympathy, and never feltsorry for herself. She was a totally ‘giving girl’ with abeautiful character and caring nature; she loved singing andlistening to music; she adored babies and young children,and they in turn adored her. Emma had an amazing zest forlife and she touched the hearts of all who met her, which isevident by all the wonderful tributes received by card and onFacebook. Donations to DEBRA from the funeral amountedto £800.

Emma has only slipped out of sight, she is still with us, andshe will always be with us – our lives enriched from havinghad the privilege of knowing such an exceptional andamazing young lady.

Love Always xxx

15/4/94 - 3/3/11by his mother, Alison

Scott WilliamWard-Schofield

Scott was quite simply ‘the love of my life’. He was themost loving and caring son anyone could wish for. A son, abrother and so much more. Never had we loved so greatlybefore, forever he will fill our hearts with love.

We want to say a heartfelt thank you to everyone for helpingus throughout Scott’s life and for helping us to copeafterwards. Scott was a remarkable young man with thebravest of hearts. Despite having severe DEB, he achievedso much in his life. He never complained to anyone, justbattled against the odds. Words cannot describe how proudwe are of him. He lived his life to the full, enjoyed going toschool and college and getting various qualifications that hewas so proud of. He always had his sights set on the verybest and we endeavoured to provide it. He had so manycaring friends and a heart so big to provide love for so many.But most of all he loved being with his family and his mum.He reflected all the goodness of everyone around him. Hismost enjoyable times were spent surrounded by family in aplace where dreams come true, Disney World.

Life will be empty without Scott but the love he gave willalways fill our hearts.

Special thanks to Tracey Adni and the Solihull team, GreatOrmond Street and Tony Eckersall.

Scott & Alison

This poem was read by Dr Sam Douthwaite at Scott’s funeral:

Not, how did he die, but how did he live?Not what did he gain, but what did he give?These are the units to measure the worthOf a man as a man, regardless of birth.But had he befriended those really in need?Was he ever ready, with word of good cheer,To bring back a smile, to banish a tear?Not what did the sketch in the newspaper say,But how many were sorry when he passed away.

Scott, we will always love you.Mum xxxx



Scott Ward-Schofield’s’aunt Jeanette works forBAE systems and theynominated DEBRA toreceive one of theircharitable grants, in memoryof Scott. Their donation of £10,800 will be usedto maintain the DEBRA caravans in Weymouth,where Scott spent some very happy holidays.

17/6/53 – 10/11/10

Lyn Thomson-Dewey

Lyn, who had EBS and lived in Bow Street near Aberystwyth,sadly passed away in November, after a short illness. Wewould like to extend our thoughts and sympathy to Lyn’shusband Terence and her family.

28/4/01-25/3/10

Gabriel Duran

More than a year has passed, and Gabriel is still here in myheart and in those of the people who knew and loved him –and believe me, there are a few! I was asked a long time agoto write a few words in memory of my son Gabriel for thismagazine, in which somehow we are all connected by EB.But words are too small and they don´t do justice if I wantyou to know who Gabriel is.

Even though it´s unimaginable, you will understand how hardGabriel had fought. He was an amazing, brave little boy witha huge heart, though often he didn’t want to show this, sothe world would not see his vulnerability. A world thatdemanded a strength beyond reason. He had to be a childin a life that was required to be much more responsible andmature than any adult. And he was (and is!) sweet andcompelled others to be so. He was also such a strong andextraordinary character!

As a mother I never thought there could be so much love inthis world; now I feel this has grown for me to the imensity ofeternity and I feel humbled. Yet when I get it I feel the mostcentred, most courageous, most at peace, most in love.Nothing will ever match the experience of having Gabriel.When I asked Gabriel what he wanted to be when he grewup, he always said “I am going to have a good wife like you

Gabriel Duran

and two children”, and I said “But as a job Gabriel, whatwould you like to do?” He said “That doesn´t matter” And hewas right, it is not about what you do, but who you are andthe love you give. Gabriel was amazingly wise and I am stilllearning from him when he visits me in my thoughts anddreams. Thank you Gabriel, thanks for being you and beingclose to me.

Your mum alwaysIris Amendra

DEBRA Research ProjectsThe funding of research into the cause and possible treatment of Epidermolysis bullosa (EB) is one of DEBRA's main goals.

DEBRA UK and DEBRA Austria are currently the largest providers of EB research funds of all of the national DEBRAs aroundthe world, and are members of DEBRA International. A great deal of progress has been made over recent years inunderstanding EB as a result of DEBRA funded research.

DEBRA is currently providing funding or part-funding for four research projects beginning in 2010.



Project 1 – EB Simplextherapy development

EBS. Getting this siRNAtechnology into the skin effectivelyso it can work on the defectivegene is however a challenge. Theresearchers are working on acream which can deliver thetreatment safely and cheaply intothe skin.

By the end of this project weexpect to have completed all thepre-clinical work on this treatmentready for an initial trial of a creamwith people who have EBS.

This three year project, led byProfessor Irwin McLean at TheUniversity of Dundee, is focusing onEpidermolysis Bullosa Simplex(EBS) and takes the first steps indeveloping a treatment for thecondition using siRNA therapy. Itoffers real hope of an effectivetreatment to people living with EBS,the most common form of EB.

siRNA is a new and powerfultechnology that allows us to switchoff the faulty genes which cause

Project 3 - understanding the role of cells andblood vessels in Squamous Cell Carcinoma (SCC)

severe forms of EB, like RDEB, itbecomes very aggressive and shortenslife expectancy by about 35 years.Conventional forms of treatment suchas chemotherapy and radiotherapy donot work and the only option is surgeryto remove tumours.

This project, led by Professor O’Tooleat Barts and The London School ofMedicine, aims to explore and

This two year project focuses on acancer called Squamous CellCarcinoma (SCC) which is the majorcause of early death in people whohave Recessive Dystrophic EB(RDEB).

In people who do not have EB, thistype of cancer is generally notinvasive and responds well totreatment. However, in people with

understand what the processes arethat make cells in a person who hasRDEB behave so differently and causethis type of cancer to be so malignant.

It is hoped that by understanding whatmakes these cells spread so quickly,we can develop therapies to interferewith this process and slow downtumour growth, therefore increasinglife expectancy.

Project 2 – fibroblast treatment of skinerosion in Recessive Dystrophic EB

collagen type VII, which is eithermissing or faulty in the skin of peoplewho have RDEB. RDEB is one of themost severe forms of EB, resulting inscarring, fusion of fingers and wastageof skin tissue.

This project is being led by ProfessorJohn McGrath, at Guy's and StThomas' Hospital, London.

This six month trial, due forcompletion in autumn 2011, involvestwenty people who have RecessiveDystrophic EB (RDEB). They willreceive injections of fibroblasts tosee if these cells strengthen theirskin and affect wound healing.

Fibroblasts are normal cells fromdonors who are able to make

The first phase of this project wascompleted in 2008 and showedrapid wound healing and a reducedtendency to blister in the skin of fivepeople who have RDEB. This newtrial will involve a larger group ofpatients and will test the safety andeffectiveness of the injections andsee if there are any unmanageableside effects.



Project 4 - studying identical twinswho have Recessive Dystrophic EB (RDEB)

RDEB. They are, however, affectedvery differently by their EB and one ofthe twins is more severely affectedthan the other.

It is hoped that this project will tell ushow two identical people, who have

Led by Professor GiannaZambruno in Rome, this two yearproject is looking at the geneticsand biology of EB.

The researchers will study twoidentical twin men who both have

the same genetic defect andmedical diagnosis, can be affecteddifferently. It is also hoped that thisproject will pave the way toeffective intervention therapiesthat could help reduce the severityof RDEB.

Readers Recommend

Lee in Kent, has recommended these shoes, which her 2 year old daughter,Alisa, loves: http://www.snugglefeet.com/classic-blue-boots-24-36.html

Snugglefeet - soft shoes for Tots

These are often a problem forpeople living with EB, who needto wear them for work. Onerecommendation from a memberwho has EB Dowling Meara isDeWalt safety boots, which canbe obtained in a lightweight,flexible fit, with a padded collarand tongue.

www.dewaltsafetyboots.co.uk

Safety Boots

Kindle E-Book ReaderDo you enjoy reading, but find it difficultto hold/grip books for long periods oftime? Well, begin to enjoy readingagain with the Kindle e-book reader; itis easy to use and simple to downloadall your favourite books and add newbooks on to it.

It was recommended to me byanother EB patient who has the sameproblems as me, due to being unableto hold or grip a book. Occasionally itcauses blisters because of the way Ihave to hold them, so I would just giveup. Now I don’t have to do that withthe Kindle as it is slim and you justpush a button to turn the pages - nofiddly bookmarks required, as it stayson the page when you switch it off,ready to continue next time you turnit on.

I am now coming to the end of mysecond book on it and the Kindle has‘rekindled’ my enjoyment of reading;I am also able to read for longer.

Another advantage of the Kindle is itsbeing so compact and light that youare able to put it in your bag and takeit anywhere with you. It’s first on my listto be packed for my upcoming hospitalstay to have my hand done. If you arehaving hand surgery or one of yourhands is really sore then the Kindle canbe used one handed.

Its Wi-Fi and 3G compatible so whenyou are in a Wi-Fi zone you can simplydownload new books onto your Kindlefrom wherever you are, providing youare in a Wi-Fi area. The battery can lastup to one month on a single charge, butit does depend how often you use it.

You can purchase the Kindle atwww.amazon.co.uk. The books arecheap as well and they downloaddirectly to your Kindle whether you buythem using the computer or the Kindleitself.

Rhian Edwards, South Wales

A member has successfullyused Able2Travel for her holidayinsurance.Telephone: 0845 839 9345www.able2travel.com

We have also been made awareof another company offering travelinsurance to people withdisabilities and pre-existingmedical conditions.

FML Insurance Services LimitedTelephone: 01702 437800www.fml-insurance.co.uk

Travel Insurancefor peoplewith medicalconditions



The Community for EB is part of aproject called Rare DiseaseCommunities, a collaboration betweenEURORDIS (the European RareDiseases Organisation) and NORD(the US National Organisation for RareDiseases). DEBRA International hasbeen an active partner in establishingthe EB community on this platform, witha group of people with EB contributingtheir ideas and initial material.

Rare Disease Communities is an onlinesocial network for patients & families toconnect with one and other to supportand share vital experiences on aspectsof living with a rare condition.Organised into condition specificcommunities, the platform will alsoprovide links to quality information andinvolve patient associations in thegovernance and growth of eachcommunity.

One of the greatest strengths of thecommunity is that the website's forumand its messages can be translatedacross German, English, Spanish,French, and Italian. A human translatingnetwork works on this to ensure quality.This presents an exciting newopportunity for people living with EB tonetwork and share experiences across

This & ThatDEBRA officegets a facelift!Last Autumn the DEBRA Officeunderwent a much needed facelift,thanks to several members of staff(& family members) who gave up aweekend and some evenings to paintthe whole office in our ‘DEBRA’colours. It certainly has brightened upthe office and makes quite an impacton visitors!

Pam has recently joined DEBRA asReceptionist/Office Administrator,replacing Kim Fenton, who hasmoved to the Income Team. Pamwill usually be the person whoanswers your calls to the DEBRAOffice - so now you will know whoyou are speaking to!

Welcome toPam Macklin

Pam Macklin

Kyle Daniel Hughes was born on11th June 2010 at 26 weeks,weighing just 2lb 7oz. his mother isGillian, whose daughter Melissasadly passed away in 2008. Nearlyone year on, Kyle is doing well andweighs 15lb 11oz. he is picturedwith his brother Aydan.

Thanks to Erica, Helen, Kim andHannah plus all the other ‘helpinghands’.

Thanks to everyone who completed the questionnaire enclosed with theprevious edition of ‘In Touch’. As promised, we held a draw from the returnedforms for two tickets to our Annual Dinner at the Savoy in London in May. Thelucky winners were Steph Green and Chris Churchill, parents of Harry.

Membership Survey

language barriers. Participants can startdiscussions, post information andinteract across national borders. Thecommunity will be moderated by asmall group of people with EB.

Please pass the news on to all of yourmembers and ask them to visit thenew Community for EB at:http://www.rarediseasecommunities.org/en/community/epidermolysis-bullosa(English version). The site has startedoff with some articles and information inseveral languages but the real successof the new community will depend onpeople living with EB getting reallyinvolved and posting their own entries.

Any questions or suggestions aboutthe Community can be sent to: RobPleticha of EURORDIS [email protected]

A new Community for EBhas been launched online!

Kyle & Aydan


Registered Charity No. 1084958 (England & Wales) SC039654 (Scotland)

for people whoseskin doesn’t workwe do

DEBRA

13 Wellington Business ParkDukes Ride, CrowthorneBerkshire. RG45 6LSTel: 01344 771 961

DEBRA Scotland

Rex House103 Bothwell Road,Hamilton. ML3 0DWTel: 01698 424 210

email: [email protected]: www.debra.org.uk

DEBRA Office: 01344 771961

Senior Management TeamChief Executive – Ben MerrettDirector of Finance – Carol HarrisDirector of Research & International – John Dart (01344 752708)Director of Nursing & Social Care – Claire Mather (07917 230192)Acting Director of Fundraising & Communications – Louise Tait (07831 852205)

Children’s Nursing Service - Great Ormond Street Hospital 0207 829 7808

(out of hours: 0207 405 9200, ask for EB nurse on call)Nurse Consultant – Jackie DenyerClinical Nurse Specialists – Lesley Foster, Juliette TurnerService Co-ordinator – Sonia Ama

Scottish Healthcare Team 01698 477777

(out of hours: call 0207 405 9200, ask for EB nurse on call)Childrenʼs Clinical Nurse Specialist – Pippa Millican 07917 230105EB Nurse Specialist (Adults) – Debbie Johnston 07557 037598Administrative Assistant – Rita Chapman

Children’s Service - Birmingham Children’s Hospital 0121 333 8224

(out of hours emergencies only: ask for the dermatologist on call stating that this isan EB child )Clinical Nurse Specialist – Ruth WardEB Nurse Specialists – Dawn James, Natalie Kingsbury, Emma McAndrew,Kay Wright

Adult Nursing Service

Nurse Consultant – Liz Pillay 0208 810 1265EB Nurse Specialists –Jennie Hon (South) 07786 850684Karen Snelson (South) 01932 596861Pauline Graham-King (North) 01434 240791Jane Clapham (North) 0121 705 7373In an emergency out of hours, contact your local Accident and Emergency department. Ifthey require information about your condition they should be advised to speak to the on calldermatology registrar at St. Thomas' Hospital, London, which is a specialist centre for EB.

Adults Service, Solihull 0121 424 2000

(out of hours: call 07846 986987)Lead Nurse Specialist – Tracy Adni 07846 986987EB Nurse Specialist – Carol Knowles 07527 679679

Social Care Team

Sondra Butterworth – North & N Ireland 07920 231271Mary Williams – Wales & Central England 01299 826999Cynthia Richards – Southern England & East Anglia 01344 771 961

Membership & General Enquiries

Cynthia Richards – 01344 771961, Editor, In Touch

DEBRA Caravan Bookings

Dawn Jarvis – 01344 771961 EB Liaison & Project Manager

Useful NumbersAll Nursing & Social Care Services are officially Monday – Friday 9.00 - 5.00


Date post:	30-Mar-2016
Category:	Documents
Upload:	simon-lewington
View:	241 times
Download:	0 times

In Touch Magazine

Documents