for people whose skin doesn’t work we do

Celebrating 40 years!

InTouchThe magazine for everyone living with EB 2018: Issue 2

Welcome

Welcome to the Summer edition of InTouch!

In th is i ssue. . .

I would like to thank everyone who came to this year’s DEBRA Members’ Weekend and AGM. It was wonderful to see new friendships develop and members sharing experiences and offering support and advice to one another. Each year I find it very inspiring to see the strong community we are. Special thanks to our inspirational speakers, clinicians, researchers and healthcare professionals for giving up their time to take part. See page 12 and 13 for pictures and more details from the day.

At this year’s AGM we bade a fond farewell to David Spence as he retired from being the Chair of DEBRA’s Board of Trustees. David has been a fundamental part of DEBRA’s success over the last 10 years. We also welcomed our new Chair of the Board of Trustees, Mike Jaega. Go to page 4 to read more about Mike and his journey with DEBRA.

As you all know, in 2018 we are celebrating 40 years of helping the EB Community. We have so much to be proud of! This issue of InTouch is dedicated to showcasing the improvements of the last four decades in EB care, support and research – all inspired and made possible by the wonderful community you are.

Claire MatherDirector of Healthcare, Membership and EB Community Support

It is with warm wishes that we bid farewell to David Spence, as he retires from being Chair of the DEBRA’s Board.

His involvement with DEBRA has been longstanding, dating back to his initial support of DEBRA’s golf days over twenty years ago. For the past ten years, he has served on the Board, first as Treasurer and most recently as Chair. During that time, he has brought professionalism to DEBRA’s governance and always shown commitment and care in exercising his responsibilities. The succession planning he has taken time to put in place will ensure that he leaves DEBRA in very good shape for the future.

His contribution has been very much appreciated by all his colleagues and the membership, and although he will be sorely missed, he leaves the legacy of a very capable Board of Trustees.

Ben Merrett, DEBRA CEO

Disclaimer: Some information within this publication has been written by people living with EB who have found certain products or services useful.

DEBRA does not specifically endorse any product or service and will not be held responsible for any consequence arising from their use. Every effort has been made to ensure that the information in this magazine is accurate at the time of publishing.

A fond farewell

Meet our new Chair of Trustees

Landmark Meeting with the USA’s Food and Drug Administration

New Support Grant Schemes in 2018

Celebrating 40 Years at the Members’ Weekend

Raising Awareness Makes a Difference – A Member’s Story

Your Top Tips for Dealing with EB

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Celebrating 40 years1978 was notable for many reasons. Most importantly for us, 1978 was the year DEBRA was founded by Phyllis Hilton, whose daughter Debra had EB. Phyllis founded the charity with a vision that remains at the heart of the organisation today – to make a world where no one suffers from EB.

As we celebrate DEBRA’s 40th anniversary this year, there is so much to be proud of.

In 1981 we funded our first research project. Now we’ve identified all the main genes that cause EB, we’re funding small-scale human clinical trials and large pharmaceutical companies are investing in global trials of potential treatments.

In 1987 we employed the world’s first specialist EB nurse at Great Ormond Street Hospital. Now we work in partnership with the NHS to enhance the EB healthcare service in the UK, making it the best in the world!

In 1999 we employed the first DEBRA social care worker to help people with EB and their families. Now we have an EB Community Support Team of seven DEBRA staff providing support across England and Scotland, helping more people with EB than ever before.

We’re closer to a cure

We’ve improved healthcare

And increased support for the EB Community

It’s your support, your stories and your voices that have made all of this possible. You help us improve public understanding of the condition and advocate for more effective treatments, better healthcare and support for the EB Community. We know more about EB than ever before and medical knowledge about the condition is constantly growing.

How did we get here?

We’ve achieved so much since 1978, but there’s still a long way to go. There are half a million people suffering from EB worldwide and we’re part of a global network of over 50 DEBRA groups working on behalf of the EB Community.

We’re committed to reaching even more people impacted by EB this year. By 2020, we aim to spend another £4.5 million on research, £1.8 million on EB healthcare and £3.3 million on support for the EB Community, improving the quality of life and bringing us closer to effective treatments and, ultimately, a cure.

Phyllis worked tirelessly to make a difference. We’ll carry on until we achieve her vision, our vision, however long it takes.

Together we #FightEB; together, we will beat EB.

Ben Merrett, DEBRA CEO

Where are we going next?

Ben Merrett, DEBRA CEO

Trustee Spotlight

Meet the New Chair of DEBRA’s Board of Trustees!

DEBRA has come a long way since its humble beginning in the North of England in 1978, 40 years ago.

The charity was started by five mums who just wanted to form a support group. My mum was one of them, and one of those first meetings

was in our kitchen. I can’t exactly say I was part of that meeting, unless you count sitting on the floor playing with cars as ‘taking part’, but I know the mums enjoyed getting together and offering comfort and advice to others going through a similar situation – raising a child with EB. Since then, DEBRA has been a constant in my life.

DEBRA has evolved over the years, turning its focus from a small support group to include funding pioneering research, championing best practice for EB patients in the medical community and providing lifelong care and support for everyone in the EB Community.

Part of DEBRA’s success is down to adapting its strategy to meet the needs of the EB Community: the once DEBRA-run nursing service is now managed by the NHS; the DEBRA EB Community Support service now covers issues ranging from assisting with housing applications to mental health support, and the funding of research projects directly focuses on improving the quality of life for EB sufferers. All of this change is down to listening to the EB Community.

If DEBRA is to continue supporting those with EB, the EB Community needs to be actively engaged with the charity – it’s the only way we can evolve and ultimately help the scientists find a cure. Having RDEB has always been a struggle, as it makes the simple things in life ten times harder. But having a group of dedicated people who truly understand or are at least willing to understand what it’s like can, and does, make a real life-changing difference.

As the new Chair of Trustees for DEBRA UK, I would like to thank David Spence for all his hard work and devotion to the cause over the years. I aim to continue the great foundations he’s put into place, and actively engage with the EB Community on major decisions and direction for the charity.

Since I’ve become a trustee, I constantly remind myself that listening to the EB Community must always come first – it’s how we can find our direction and it’s how we can best target help.

Mike JaegaChair – DEBRA’s Board of Trustees

“I constantly remind myself that listening to the EB Community must always come first – it’s how we can find our direction”

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Food and Drug Administration meeting

DEBRA Member Scott O’Sullivan attended a landmark meeting with the USA’s Food and Drug Administration (FDA) on behalf of DEBRA UK and the wider international EB Community.

DEBRA of America met directly with the FDA, the body responsible for regulating the use of drugs and biological products within the US, including potential therapies for EB. During the meeting – a first in EB – people with EB and those caring for people with the condition took the opportunity to educate the FDA about daily life with EB and the importance of developing effective treatments. Members of the EB Community around the globe tuned in to watch the meeting and participate in remote polling when it was live-streamed on YouTube in May.

Scott shared his experience of living with EB and talked about symptoms of the condition that have the biggest impact on his life. “Not being able to do dressing changes independently has a big impact on my life – I like travelling which it inhibits me from doing to a certain degree.” Scott said.

International News

All together 42 FDA officials attended the meeting, either in person or viathe live broadcast. Senior officials representing the regulators also spokeat the event, highlighting the importance of this meeting.

Brett Kopelan, Executive Director of DEBRA of America, thanked the FDA for their commitment to better understanding the needs of people withEB.

“The FDA’s demonstrated willingness to incorporate the patients’ voicein their risk-benefit analysis and the regulatory process in general makesthem a true partner,” he said.

Brett closed the event on a positive note, saying: “We, right now, are in an exciting time in EB. There is light at the end of the tunnel, and it’s the first time that I can say that.”

“Let’s walk out of here with our heads held high, knowing that we aremaking a difference,” he added.

The meeting, led by DEBRA of America, provided valuable insights into the symptoms, effects and real-life impact of the condition which will guide the FDA in determining the regulatory pathway of all EB research and therapy development. It’s hoped this will also pave the way for potential treatments to be approved and made accessible in other countries around the world, including the UK.

You can watch the recording of the meeting on YouTube: www.youtube.com/DebraofUS

New support grant schemes for you!

The fund is for short course fees, learning tools or a contribution to other courses or equipment to support learning for a person, of any age, who has EB.

In 2018 we have launched two new support grant schemes with the aim of enhancing daily living and promoting independence for our Members. Learn a new skill or travel to places you always wanted to see and experience. The new grant schemes are here to help you achieve your dreams!

DEBRA Education and Learning Fund

Helping The EB Community

What can the fund be used for?

Grants are available to any DEBRA Member who has EB, of any age and with any type of EB, their parent or immediate carer.

Who can apply?

Download the DEBRA Education and Learning Grant Application Form from our website: www.debra.org.uk/learningfund Alternatively, please call the DEBRA Office on 01344 771961 for a paper copy to be sent to you in the post.

How do I apply?

George and James, DEBRA Members

If you require help or have any questions about any of the DEBRA support grants please talk to your DEBRA community Support manager or DEBRA Membership Manager.

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DEBRA Travel and Independence Fund

Helping The EB Community

The fund is to cover or provide a contribution to school or university trips, breaks, holidays, day trips and travel in the UK and overseas for a person, of any age who has EB.

What can the fund be used for?

Grants are available to any DEBRA Member who has EB, of any age and with any type of EB. The fund is to promote independence rather than cover the costs of family holidays or outings, therefore, if it’s not possible to travel independently, up to one parent or animmediate carer can be included in any application toaccompany the applicant with EB.

Who can apply?

Download the DEBRA Travel and Independence Grant Application Form from the DEBRA website: www.debra.org.uk/travelfund Alternatively, please call the DEBRA Office on 01344 771961 for a paper copy to be sent to you in the post.

How do I apply?

Jess, DEBRA Member, at Disney World, Florida

Completed forms should be sent to the Membership Manager by email atmembership@debra.org.uk or post:

DEBRA, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire RG45 6LS

Find out more about the DEBRA Travel andIndependence Fund by visitingwww.debra.org.uk/travelfund and about the Education and Learning Fund by visiting www.debra.org.uk/learningfund

Research Update

The story of EB research

1981First research project funded

A total of 10 causative genes have now been discovered

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1992First EB genes are identified

DNA-based prenatal diagnosis is developed

1995

2000First EB cancer projects funded

2002First EB gene therapy clinical trial

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Research Update

2005• Development of small therapeutic drugs called siRNA to reduce effect of defective gene in EBS starts

• First human ex-vivo gene therapy clinical trial for JEB starts

2006Bone marrow transplant (BMT) trials for RDEB start

Up to 18 genes have now been identified for more than 30 subtypes of EB

2012

Ten children are enrolled in the EBSTEM trial at Great Ormond Street Hospital led by Prof. John McGrath - the first clinical trial of its kind

2013

2014DEBRA begins funding a research project, led by Professor Jouni Uitto at Thomas Jefferson University, Philadelphia, USA to see if existing drugs can be repurposed to treat some kinds of EB

Amicus Therapeutics’ Scioderm division carries out a phase 3 clinical research study evaluating a topical cream to treat skin blistering and lesions associated with EB

2016

• DEBRA begins funding the first human clinical trial of a targeted cancer therapy specifically designed to treat the cancer, Squamous Cell Carcinoma, caused by Recessive Dystrophic EB

• DEBRA commits £500k to funding PRUSTEM itch project, a clinical trial to help alleviate itch

• EB researchers break new ground with skin graft trial in Germany

2017

Community Support

Helping the EB community in more ways than ever beforeThe team that we now know as DEBRA’s EB Community Support and Membership Team started out with just one Social Care Worker. Now a team of seven is available to offer you information and support to tackle a wide range of social issues such as benefits, finance, housing, education and employment. There are low cost holidays available in adapted holiday homes at five locations across the UK and we hold an annual national Members’ Weekend and other Get Together events throughout the year to provide you with the opportunity to meet and share your experiences with other families living with the condition - managed and organised by the Membership Team of four.

Remember, our team is always on hand so don’t hesitate to get in touch!

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DEBRA is founded by Phyllis Hilton whose daughter Debra had EB – the charity was the world’s first EB patient support group

First DEBRA Day, bringing together people living with EB for the first time

First DEBRA holiday home opens to offer low cost respite breaks to people living with EB

DEBRA appoints its first Social Care Worker

DEBRA appoints its first Director of Healthcare, Membership and Community Support

DEBRA’s Social Care Team becomes the EB Community Support Team and expands to seven members of staff providing support to people living with EB and their families across England and Scotland

Over 300 people from across the EB Community attendDEBRA’s first Members’ Weekend & AGM

DEBRA opens fifth holiday home in the Lake District

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Community Support

Who is my DEBRA Area Community Support Manager?

Elizabeth Davenport Scotland, North East England and NI in partnership with DEBRA Ireland

Sondra ButterworthNorth West England and Isle of Man

Zainib HussainCentral England and Wales

Louise GriffithsSouth Kent

Sabrina KhanSouth, M4 Corridor & London

Rowena Hamilton

East Anglia, Oxford & Berks

Nathalie AustinLondon, Kent, East Sussex & Surrey

To find out more about how the Community Support Team can help you, please visit the DEBRA website:www.debra.org.uk/support-for-you

Membership

40 Years Celebratory Members’ Weekend and AGMOn 19 and 20 May we celebrated DEBRA’s 40th birthday at the annual Members’ Weekend and AGM. More than 200 people attended the event, which was filled with fun activities and informative presentations from researchers, healthcare professionals, DEBRA staff and members of the EB Community.

It was wonderful to see old friends catching up with each other and new friendships develop. The weather was kind to us and not even the Royal Wedding could stop us from switching off from the outside world and turning towards each other on this very special weekend. Thank you to all of you who came along and celebrated with us!

Here is what you had to say about the weekend...

This event is amazing and a good

opportunity to meet others with EB

The activities that are provided are perfect! The distance would be an issue if it wasn’t for the overnight stay which enables us to relax and enjoy the whole experience

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Excellent, relaxed atmosphere“

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The kids loved

the overnight

stay and evening

entertainment

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You can catch up with the presentations from Members’ Weekend on our website. To watch the recordings go to www.debra.org.uk/Members-Weekend-2018

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Membership

DEBRA staff have been brilliant

– really friendly and helpful“ ”

Research presentations were

really informative“ ”

It’s great to spend the evening with others who have EB

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Thoroughly enjoyed ourselves, loved

meeting with old friends and new people

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Fabulous 40th celebration, yummy cakes and butterfly design lovely!

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The event makes you feel you are supported and not alone

“” With this event, we felt the

warmth and care of this big family “ ”

Your trip is likely to be cheaper than during the summer months The DEBRA holiday homes are offered at an even more reduced price during off-peak seasons. It is likely that entrance fees to popular attractions are also lower once the summer holiday rush comes to an end.

There will be fewer people on the roads and on the beach This means more space on the train, less time stuck in traffic on the motorway and shorter queues, so you can spend more time actually enjoying yourself!

Cooler weather means more comfort When you’re out and about exploring what the area has to offer, it’s easier to keep cool. Fit more into your day and enjoy it more too!

An autumn holiday breaks up the long wait between summer and the festive season Booking a trip for the autumn months gives you something to look forward to – fun times with your family or a chilled out trip on your own.

There is still so much to do Most of the activities at or near the holiday parks only close for a short period during winter and generally stay open in the autumn months. But you won’t have to fight the crowds for the best spots.

Membership

8 reasons to have your holiday in the autumnDEBRA has five holiday homes for DEBRA Members to use – they are available at an even lower price during off-peak seasons. Our Brynteg, North Wales and White Cross Bay, Windermere holiday homes are fully heated and are only closed for a few weeks over the winter period each year. Holiday homes in Weymouth and Poole have restricted usability over the autumn months and are closed during winter.

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White Cross Bay, Windermere

White Cross Bay

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To find out more about the activities on offer at each holiday park or book your autumn holiday now please call the Membership Team on 01344 771961.

Membership

The best colours are autumn colours Imagine what your holiday pictures will look like with those vibrant autumn colours. Get out there and create some beautiful memories.

Beautiful views In the autumn you can enjoy all the beautiful views each of the scenic locations offer without the crowds of tourists.

Longer evenings mean more cosy time with your loved ones When was the last time you had a chance to just relax and enjoy each other’s company without having to do something or be somewhere? Summer holidays can be action

packed with long days spent on the beach. The longer autumn evenings mean you can create those family memories while playing board games, having a lovely cuppa or just cosying up on the sofa and watching a movie – all of our holiday homes have DVD players and a selection of DVDs and games to enjoy

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We asked for your opinion about the best destination for our next holiday home. Unfortunately, we only received a few responses. Please do have your say and go to

www.debra.org.uk/book-a-debra-holiday-home/holiday-home-survey-2018 to complete our quick survey. Thank you!

Lake Windermere

Official opening of the DEBRA holiday home, White Cross Bay DEBRA holiday home, White Cross Bay

Healthcare

40 Years of caring for people with EBThanks to the special partnership between DEBRA and the NHS, everyone with EB can now expect to receive care and support from a specialist multidisciplinary EB team including nurses, dietitians, podiatrists and physiotherapists. This ‘best in the world’ service is the remarkable result of hard work and dedication of healthcare professionals in the last four decades.

1987- 1989DEBRA funds multiple EB specialists – physio, dietician, children’s nurse & adult nurse – appointed at NHS hospitals

Great Ormond Street and St Thomas’ Hospitals are established as Centres of Excellence in EB

1990

DEBRA funds first podiatrist specialising in EB

1998

“There’s far more awareness and validation of the psychological and social impact of living with EB. The way that it impacts on relationships, opportunities in the workplace, key developmental phases in childhood and the sheer emotional impact of the pain and other challenges that EB presents, is starting to be recognised and addressed.” Adult EB Team at Solihull Hospital

2002Birmingham Children’s Hospital and Solihull Hospital are established as Centres of Excellence in EB

2004The Robin Eady National Diagnostic Epidermolysis Bullosa Laboratory at Guy’s and St Thomas’ NHS Foundation Trust is opened to provide rapid diagnosis of all suspected EB cases

2011DEBRA-funded EB podiatrist develops new insoles designed specifically for those with EB

2012

• NHS agrees to fund all core EB nursing activities• First International Best Practice Guidelines in EB Woundcare

“The biggest improvement is that 40 years ago there was no DEBRA. Now we provide full interdisciplinary team care.” Jane Clapham, Lead EB Clinical Nurse Specialist at St Thomas’ Hospital

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Healthcare

Congratulations to Caroline and Annette!We would like to congratulate Caroline Mackenzie and Annette Downe, EB Clinical Nurse Specialists at St Thomas’ Hospital, London, on being two of the first nurses to receive the Nightingale Award.

The award, named in honour of the pioneering nurse Florence Nightingale, was launched at Guy’s & St Thomas’ NHS Foundation Trust. The aim is to recognise the most outstanding nurses and midwives to equip them to provide outstanding care delivered with the utmost skills through kindness and compassion. The programme is a work-based learning module at Level 7 (Masters) provided by King’s College London.

“The Nightingale nurse is a dedicated pioneer, innovative with an enquiring mind, who inspires others and goes above and beyond the call of duty, putting patients and their carers at the centre of everything they do.”

For those of you who know Caroline and Annette, I am sure you will agree with me that this sums up both of these two wonderful people. Both have worked extremely hard to fit this in around their very busy roles as EB nurses.

In addition, I would like to bring it to your attention that Annette Downe has been awarded a distinction in MSc Skin Integrity Skills and Treatment.

Jane ClaphamLead EB Clinical Nurse Specialist – St Thomas’ Hospital

Welcomes and FarewellsWelcomesWe welcome four new specialist EB nurses who joined the team this year: Hayley Ball and Jennifer Heaton at Birmingham Children’s Hospital; Harriet Eagleton and Claire Vincent at Great Ormond Street Hospital.

Farewells We say thank you and farewell to a number of nurses who have left the team this year: Chris Bloor at St Thomas’ Hospital, Lesley Foster at Great Ormond Street Hospital; Tracy Adni at Solihull Hospital. Thank you for all your hard work and commitment.

2013• The DEBRA Clinical Fellowship is launched in partnership with Great Ormond Street and St Thomas’ Hospitals• DEBRA launches first EB outreach clinic• Working with DEBRA, EB nursing teams design and develop a new range of dressing retention garments for EB patients

2017• Rare Diseases Centre opens at St Thomas’ Hospital• DEBRA provides funds to develop and implement the world’s first accredited EB podiatry training programme

2014

DEBRA Patron the Countess of Wessex GCVO visits an EB clinic at St Thomas’ Hospital

Member To Member

Your Top Tips We asked you for tips for ways to make your EB more manageable, whether you found these out yourself or heard them from others. Thank you to everyone who responded. Here are the ‘Top Tips’ you wanted to share with each other!

• Collect and keep in one place copies of all relevant information (medical reports, etc.) your school might need

• Contact the DEBRA EB Community Support Teams and your Healthcare Team for support and EB information when starting school, they are really helpful

• Start planning for school early

• Most barriers to education can be overcome with good communication and problem solving between the family/school/EB Team and the DEBRA EB Community Support Team

• Always ask for help if it’s not going well

• Get the hospital and DEBRA Team involved from the start – most schools are great once they feel confident to care for your child

Education & Learning

• Have a look at EB Facebook groups and events happening near you so you can talk to others in the same situation

• When you go to events, be brave and talk to people you don’t know as you’ll have a lot in common

• Have information about EB and DEBRA with you – if someone is starring at you, you can offer them a leaflet

• Make time for each family member including yourself – children (grown up or not) without EB need time with their parents too

• Make all your children’s schools aware that someone in the family has EB – often there is extra support for siblings in school

• Make use of the DEBRA holiday homes for some fun family time at low cost

• Taking time out is a good thing – don’t feel guilty

• I have found going to the pub is often useful

Emotional & Family Support

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Member To Member

This article contains quotes from DEBRA Members who have found certain products useful. Their experience may differ from yours. DEBRA does not endorse any product or service mentioned in this article.

• I find a Chillow Pillow or gel cooling cushions great for keeping my feet cool

• I have found that the Skechers range of memory cool footwear are the only thing I can wear

• I used cornflower, or Maizena in South Africa, on the blisters (EB Simplex) as it dries them up

• I have EB Simplex and I find ice cubes wrapped in a clean cloth gently held against the surrounding of the affected area helps me – taking the heat out eases pain, itching and tightness

• I wear a long sleeve t-shirt or leggings instead of Tubifast when I can as I find it makes my skin super itchy and uncomfortable

• I use rubber bands to help get pull lids off items, like my liquid eyeliner pen

• If I can’t put my whole makeup on, or I’m not feeling well, putting a tinted lip balm on makes me feel better, and if I’ve got sores in my mouth it stops my lips from drying out

• My daughter has EB Simplex and she did majorette for a while – we found tight fitting, soft leather gloves helped prevent blisters

Healthcare & Equipment

• The DEBRA Community Support Team will help you claim the benefits that you are entitled to

• Photocopy (or take pictures with your phone) of ANY form you fill in and send off

• Always ask for a benefit decision to be reconsidered if you don’t agree

• Keep all benefits and finance information in a folder (with dividers). Also add a copy of the latest medical information – have a separate folder for every family member

• Apply for a blue badge if you are eligible – it’s so helpful!

Benefits & Managing Money

EB In The News

Raising Awareness Makes a Difference

DEBRA Member Wendy shares her experiences of raising awareness of EB and how this led to great interest in the condition from the media.

“ When my daughter Heather was born 28 years ago, everybody was amazing. Our family, friends and colleagues were keen to do something to support us. Emotionally it was greatly appreciated, but practically there wasn’t much they could do.

Heather’s Godmother had the wonderful idea of fundraising for DEBRA and our local hospital. She organised a sponsored aerobics session which was an amazing success, raising £2,000 and being featured in the local paper. This was the beginning of our fundraising and awareness raising.

We established a Swindon Group and raised funds in different ways. The more we did the more we appeared in the local press. Soon everyone in the area knew about EB, from the Mayor, to the scouts and local stores, generating more money and

awareness. This led to Heather being featured in national media, including the BBC Lifeline Appeal.

Since her late teens, Heather has been the one driving all these efforts. She understands the importance of keeping up the momentum, as well as giving correct information. Most recently she has given interviews for Pick Me Up magazine, the Daily Mirror, the #FightEB campaign and she involved herself in our local DEBRA shop’s 10 miles sponsored walk!

EB can happen to anyone. It is crucial to tell the world about it so Heather and everyone who suffers with EB now, as well as future generations, can live life to the full. There has been so much improvement in EB healthcare, support and research since Heather was born and it is thanks to the condition getting more attention. Being able to contribute to this movement makes us feel reassured that we are doing our bit.

Media and fundraising for someone with EB can be daunting, but approached in the correct manner, can be rewarding, thought provoking and awareness raising.”

Wendy Skerry, DEBRA Member

Tell Your Story and Raise Awareness Register your interest in our EB Media Ambassador Scheme at www.debra.org.uk/mediarep or call Miranda Lloyd on 01344 771961 to find out more.

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DEBRA’s CEO has completed a 40 year anniversary challenge!

2018 is DEBRA’s 40th anniversary and our CEO, Ben Merrett has cycled 440 miles in 4 days from Bristol to Edinburgh to raise money for DEBRA.

“Starting on June 11th I cycled 440 miles in 4 days in memory of James Dunn, the bravest man I have met. James was fearlessly determined to make the most of each and every day in spite of what he had to struggle with. He wanted to help others by supporting DEBRA and you can help me raise money for this great cause.” Ben Merrett, DEBRA CEO

You can read more about Ben’s challenge at the DEBRA website: www.debra.org.uk/benscycle

Volunteering & Fundraising

Ben Merrett, DEBRA CEO

Parallel London returns in 2018!Join Parallel London, a fully accessible fun run and free family festival for all ages and abilities. There are no time limits or pressures. Start together, finish whenever!

Run, walk or wheel – everything goes!

Location: Kennington Park, Lambeth, London

Date: Sunday 21 October 2018

Distances: 100m, 1k, 1k Sensory, 5k

Registration fee: £15

Sponsorship target: £150

To find out more or register, please get in touch with Jack at jack.schofield@debra.org.uk or 01344 762549

You might have heard about changes to the Data Protection Law, often mentioned as GDPR, which regulates how we collect and handle information about you and what sort of communication we can send you in the post or via email. DEBRA collects data to fulfil the charity’s aims and objectives. DEBRA will always process your data fairly and lawfully and will only collect data from you to deliver our services and provide support. Full details of DEBRA’s Privacy Policy can be found at www.debra.org.uk/privacy

We collected your information when you signed up to be a DEBRA Member. You receive In Touch Magazine as part of your Membership benefits. We will never use your data for advertising or marketing purposes unless you specifically asked for it. If you no longer wish to be a DEBRA Member, please contact the Membership Team at membership@debra.org.uk

A word about data protection

Company support

This year over 200 people impacted by EB came together at our annual Members’ Weekend and AGM. We would not be able to organise such a great event without our corporate sponsors who have been supporting DEBRA for many years now.

Thank you to our wonderful sponsors: Castle Creek Pharma, Flen Health, Bullen Healthcare, Clinisupplies, Aspen Medical and CliniMed.

The companies behind Members’ Weekend

“We support the annual DEBRA Members’ Weekend as it gives us a great opportunity to meet up with many of our EB patients in person (along

with their families, friends and carers) to “say hello”, to make sure we are providing the level of service that they need and to find out what more

we might be able to do for them. We get the chance to speak to new EB patients about how we could help them and also to the EB nurse teams as we work very closely with them. Bullen Healthcare feels it’s important

to support DEBRA as we too want to #FightEB and we know that the charity is working hard towards that aim.”

“At Flen Health our motto is “Live the life you love”, all our research and development has been done by putting the needs of the person at the

centre. With this at the forefront of why we develop products we feel that is important to support events like the annual DEBRA weekend as it is for

the person and the families living with EB, and supporting them to live the life they love.”

“At Castle Creek patients always come first. This is our core value, and we apply it to everything we do in our day-to-day business. By supporting

patient-focused activities such as the recently held annual DEBRA Members’ Weekend, we foster networking between EB patients and their

families and care givers. We also help bring them together so they can share their experiences and support one another. We value the opportunity to

help organizations like DEBRA because their cause is our cause. We help DEBRA because we believe their mission is the same as ours “Helping EB

patients as best as they can”. At Castle Creek, this is a noble cause.”

Amir Tavakkol, Chief Development Officer, Castle Creek Pharma Inc.

Flen Health

Bullen Healthcare

“It is always a great pleasure for Clinisupplies to attend the DEBRA events as they gives us an opportunity to meet up with people who suffer

from EB, speak to them about how we can support them and give us a better understanding on what their needs are.”

Clinisupplies

22 www.debra.org.uk

InTouch 2018: Issue 2 23

EB ‘get togethers’

Save the date! We are excited to announce that our largest EB social event – the DEBRA Members’ Weekend and AGM – is returning to Drayton Manor Theme Park in 2019.

Saturday 18 - Sunday 19 May 2019 - Save the dates now!

On the Saturday there will be presentations from world class EB researchers, healthcare professionals, and of course, members of the EB Community, as well as fun activities for all ages. Stay the night at the hotel and join our evening do that will include an evening dinner and disco. Enjoy entry into the theme park on Sunday 19 May.

We depend on your feedback and suggestions to make this event better year on year, and a great experience for you.

Please share your thoughts about the 2018 Members’ Weekend and AGM by completing our online feedback form at... www.debra.org.uk/Members-Weekend-2018

The DEBRA Members’ Weekend and AGM is a wonderful opportunity to meet others living with EB, make new friends and share experience in a relaxed environment.

We really look forward to seeing you there!

Your feedback matters...

Alternatively please email your suggestions to membership@debra.org.uk

Useful Numbers

HealthcareChildren’s Nursing Service – Great Ormond Street Hospital 0207 829 7808

EB Clinical Nurse Specialists – Katie Plevey, Lois Pendlebury, Harriet Eagleton, Finola Sheehan, Claire Vincent

Service Co-ordinator – Sonia Ama

Children’s Nursing Service – Birmingham Women’s and Children’s Hospital (out of hours emergencies only: ask for the dermatologist on call stating that this is an EB child)

0121 333 8224

EB Clinical Nurse Specialists – Dawn James, Victoria Lynne, Danielle Cunnington, Jennifer Heaton, Hayley Ball

Adult Nursing Service – St Thomas’ Hospital 0207 188 0843

Lead EB Clinical Nurse Specialist – Jane Clapham 07775 648472

EB Clinical Nurse Specialist – Annette Downe 07786 850684

EB Clinical Nurse Specialist – Caroline Mackenzie 07833 401838

EB Clinical Nurse Specialist – Karen Snelson 07786 850683

EB Clinical Nurse Specialist – Catherine Nye 07825 273368

Service Co-ordinator – Frances Skehan 0207 188 0843

Adult Nursing Service – Solihull Hospital 0121 424 5232

EB Clinical Nurse Specialist – Kal Begum 07966 801710

EB Clinical Nurse Specialist – Bryony Jay 07816 341465

Lead EB Clinical Nurse Specialist – Carol Knowles 07527 679679

Scottish Healthcare Team 0141 211 8773

EB Clinical Nurse Specialist (adults) – Debbie Johnston 07772 628831

EB Clinical Nurse Specialist (paediatrics) – Sharon Fisher 07930 854944

Administrative Assistant – Tracy Scott (Mon – Wed, 9am – 3.30pm) 0141 211 8773

In an emergency call 999. Out of hours for urgent medical help contact NHS 111 or your GP.If they require further information about your condition they should be advised to speak to the on call dermatology registrar at your specialist centre

for EB. To contact the EB nursing teams by email please visit www.debra.org.uk/nursingcontacts.

DEBRA, DEBRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire, RG45 6LS.Email: membership@debra.org.uk Web: www.debra.org.uk

Follow us on /DEBRACharity @CharityDEBRA @CharityDEBRAA charity registered in England and Wales (1084958) and Scotland (SC039654). Company limited by guarantee registered in England and Wales (4118259).

DEBRA Office 01344 771961

Director of Healthcare, Membership and EB Community Support – Claire Mather

Membership enquiries 01344 771961

Membership Manager – (all projects and enquiries linked to Membership) Hazel Ewens

Membership Administrator – Sandra Welfare

Brand Communications Officer (Member communication enquiries) – Miranda Lloyd

Team Support Manager – Karen Whitaker

Team Support Administrator - Sharon Clinton

Community Project Lead - Helen Weaver 07880 193118

EB Community Support Managers

North of England, Wales, Scotland and NI Regional Manager – Sondra Butterworth 07920 231271

Central England and Wales Area Manager – Zainib Hussain 07920 231270

Scotland and North East England Area Manager – Beth Davenport 07917 230105

South of England Regional Manager – Louise Griffiths 07747 474454

South of England Area Manager – Rowena Hamilton 07747 474051

London, Kent, East Sussex and Surrey - Nathalie Austin 07717 774553

South, M4 corridor & London - Sabrina Khan 07917 230191

Fundraising

Fundraising Team – Ailsa Winter, Jack Schofield, Lucie Robson, Miranda Webber 01344 771961