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Our Ambassadors

We are incredibly grateful to our DEBRA ambassadors who raise awareness of EB, of DEBRA, and the work that we do to support the EB community in the UK.

There are many ways that our ambassadors support and represent the charity, including talking and answering questions about EB and DEBRA in the media and at events, by participating in involvement network initiatives, and by promoting awareness and fundraising activities.

DEBRA ambassadors go above and beyond to BE the difference for EB.

We operate a nominations process with ambassador candidates nominated by DEBRA colleagues and trustees, and decided by the DEBRA Nominations and Governance Committee. To make a recommendation or for more information about DEBRA ambassadors, please contact us

Michel Roux Jr

Michel Roux Jr wearing a chef's jacket stands in a warmly lit room.

 

Michel is a world-renowned chef, who has run the hugely successful Le Gavroche restaurant in London since 1991, securing two Michelin stars.

He is also a very familiar face to millions of people due to numerous appearances on TV shows including MasterChef: The Professionals, Saturday Kitchen, and Food and Drink.

Michel has been a DEBRA supporter for many years, including hosting our annual Great Chefs Dinner, which in 2023 raised over £100,000 towards our A Life Free of Pain appeal

Emma Dodds

Emma Dodds pictured holding a microphone and a rugby ball stands on a sports field, wearing a dark blazer.

 

Emma is a well-known Scottish broadcaster, presenter, and public speaker who currently presents football coverage on TNT Sports.

Emma assists the charity in many ways, including the coordination and hosting of DEBRA events in Scotland such as the 2023 sports dinner featuring our Vice President, Graeme Souness. She has also helped introduce new contacts to the charity through her wide network, including sports personalities who have attended and supported our Scottish events.

Through Emma’s social media channels, she also raises awareness of EB and our charitable activities.

Scott Brown

Scott Brown stands with arms crossed, wearing a sports shirt, next to a "DEBRA" sign for the butterfly skin charity. A TV screen above shows a laboratory image.

 

Scott Brown is an ex-Scotland international footballer who played over fifty times for the senior Scottish national team and spent fourteen years with Celtic FC where he won the Scottish premiership title ten times, and the Scottish cup and Scottish league cup six times each. Scott also won the Scottish cup with Hibernian and is now manager of Scottish Championship side Ayr United.

In his role as a DEBRA UK Ambassador, Scott wants to use his profile in Scotland and his platform within the professional game to help raise awareness of EB and support for DEBRA UK as we seek to ensure that in the future no one must suffer with the pain of EB.

Steve Rider – Golf President

Steve Rider stands on a golf course holding a club, wearing a navy shirt and light trousers.

 

Steve Rider is familiar to sports fans up and down the country from presenting numerous sports programmes including Sportsnight and Grandstand on the BBC, football coverage, Formula 1, and the 2011 Rugby World Cup on ITV, and most recently anchoring coverage of the British Touring Car Championship on ITV4.

Steve is also an avid Golfer and fulfils the role of Golf Ambassador for DEBRA, utilising his extensive list of contacts to garner support for our annual programme of golf days, which in 2023 brought in over £200,000 to support the charity.

John Williams MBE – Culinary Advisor

John Williams MBE is pictured in a white chefs uniform smiles while standing in a room with elegant decor.

 

DEBRA is very grateful to be able to count on the support of highly acclaimed Chef, John Williams MBE.

John is extremely well connected from over four decades of working within the hospitality industry which included working his way up the ranks at some of London’s most prestigious hotels and being appointed Maître Chef des Cuisines in 1995. Since 2004 he fulfils the role of Executive Chef at The Ritz London, the world-renowned 5-star luxury hotel in Mayfair.

As Culinary Ambassador for DEBRA UK, John uses his extensive list of connections to help secure vital support for the charity and its culinary events.

Dr Anna Martinez MBBS MRCP FRCPCH

A woman with dark hair wearing a polka dot blouse and pearl necklace is speaking. The background is blurred.

 

Dr Anna Martinez is one of the UK’s leading paediatric dermatologists and is the clinical lead of paediatric dermatology at Great Ormond Street Hospital (GOSH) in London.

Anna set up the combined allergy/dermatology service at GOSH and is an expert in the management of skin fragility diseases including EB. She has led the Nationally Commissioned Service for EB since 2003.

In her role as DEBRA ambassador, Anna helps raise awareness of EB and the impact it has on the individuals and families she meets every day living with the condition. Anna is also a member of the DEBRA Scientific Grant Advisory Panel, where she uses her extensive experience and understanding of EB to review research grants and make research investment recommendations to DEBRA’s Charitable Purposes Committee.

Professor Gareth Inman

Portrait image of Prof Gareth Inman.

 

Professor Gareth Inman is the Director of Research Strategy at the Cancer Research UK Scotland Institute and Professor of Cell Signalling at the University of Glasgow’s School of Cancer Sciences.

Gareth is an expert in squamous cell carcinoma, which is a common type of skin cancer, and actively works with DEBRA both to raise awareness of EB at events such as our Scottish Parliament reception, and to better understand the genetic and biological events that drive the formation of cancerous cells in people living with EB. With greater understanding we hope to be able to identify effective drug treatments that can target these processes.

Professor John McGrath

Professor John McGrath is pictured standing against a blue background.

 

Professor John McGrath is an internationally renowned dermatologist and Professor of Molecular Dermatology and Head of the St John’s Institute of Dermatology at King’s College, London.

John is an expert in the field of EB and genetic skin diseases where people have mutations in their genes that affect their skin.

In his role as DEBRA ambassador, John has spoken passionately with politicians including the Minister of State for Health and Secondary Care about EB and the opportunity that exists through drug repurposing to radically improve quality of life for people living with the condition.

Mark Moring

Mark Moring stands in front of a leafy green bush, wearing a butterfly pin on his lapel.

 

Mark is a National Sales Director at The Morelli Group, a leading distribution business within the automotive industry. Having worked in this sector for over 30 years, Mark has used his platform and vast network of industry contacts to raise awareness of EB with the many companies that he works with, with many of them now adopting DEBRA UK as their principal charity partner.

It was 2009 that Mark first became involved with DEBRA UK and he has supported our annual DEBRA UK Fight Night with Frank Warren ever since. In 2024 Mark launched the first DEBRA UK Sports Car Rally, which he hopes will be equally as successful.

Simon Davies

Simon Davies pictured sitting by a window with a blurred cityscape background.

 

As an M&A Adviser for over 30 years, Simon has spent his career helping businesses to navigate the intricate world of mergers and acquisitions.

Simon was first introduced to DEBRA UK at our annual Fight Night fundraiser 12 years ago, he was moved by what he saw and has been an avid supporter of the charity ever since.

As well as attending, bringing along guests, and thus introducing new people to the charity at our gala events, for the past 10 years Simon has also kindly auctioned off 2 weeks every year in his ski chalet which to date has raised an incredible £150,000 to support the UK EB community. Simon also helped us secure alternative sources of finance and support when most other revenue sources dried up during the Covid-19 pandemic ensuring we could continue to support the UK EB community in the most testing of circumstances.

Lucy Beall Lott

Lucy Beall Lott stands behind a wooden podium with a microphone, wearing a black blazer and a blue top.

 

Lucy has recessive dystrophic epidermolysis bullosa (RDEB) but rather than let EB define her she has used it as a force that has helped shape who she is today.

Despite the many challenges that EB has created throughout her life, including dozens of surgeries, Lucy has become a powerful activist promoting body inclusivity and diversity. Lucy has modelled for Vogue Italia and Cosmopolitan UK and was the first person with RDEB to complete a Masters degree at Cambridge University. Lucy is currently studying a PHD at the University of St Andrews.

Lucy is passionate about using her platform to draw attention to EB and to make a difference for the wider EB community. In her role as a DEBRA ambassador, she has passionately spoken about her experiences of living with EB on national TV and radio, and in the Scottish parliament.

Vie Portland

Vie Portland is pictured standing and reading a book aloud.

 

Vie, who has epidermolysis bullosa simplex (EBS), is a very active member of the UK EB community who has written and published several books which share the realities of living with EB and encourage everyone, especially children, to be accepting of those disabilities and to not define people by their disability. She also set up the UK’s largest EB Facebook group.

Vie has and continues to support the charity in numerous ways, including inputting many hours into the DEBRA involvement network, where she has influenced everything from what research we fund, to organising members weekend, and providing feedback in support of the pathways project, which is focused on delivering resources that satisfy the key needs of our members.

Vie candidly shared her story via the EB stories blog and has been an active participant at DEBRA events including members weekend, where she ran sessions to encourage connection and interactions within the community. Vie will also be sharing her story at the DEBRA House of Commons reception in June 2024.

Fazeel Irfan

Fazeel Irfan is pictured speaking into a microphone inside a boxing ring.

 

Fazeel has recessive dystrophic epidermolysis bullosa (RDEB) and is passionate about campaigning for research funding to find a cure for EB.

As a DEBRA ambassador, Fazeel, and his family have supported the charity in numerous ways including volunteering at their local shop in Croydon. Fazeel has also featured in DEBRA fundraising campaigns and uses his own on-line platforms including his YouTube to inform people about EB.

Fazeel passionately spoke at DEBRA’s 2023 Fight Night event about EB, the impact that it has on his life and his hopes for the future. He has also previously spoken about EB on TV shows including ITV’s Paul O’Grady’s Little Heroes and BBC’s The One Show.

Isla Grist

Isla Grist sat next to Graeme Souness on a sofa.

 

Isla has recessive dystrophic epidermolysis bullosa and her friendship with DEBRA Vice President, Graeme Souness, captured the public’s attention in 2023 as part of DEBRA’s A Life Free of Pain appeal. Isla bravely, and publicly opened up about the devastating impact that EB has on her physical and mental wellbeing. This included interviews on the couch with the BBC Breakfast team and filming back at her family home in Inverness, where Isla allowed the BBC team to film a day in her life, which really brought home some of the daily challenges that she, her family and carers face living with EB.

Despite the challenges associated with travelling, Isla was also there in Dover to support her dad, Andy, and Graeme as they swam the English Channel in June 2023 to raise awareness of EB and funding for clinical trials.

As well as being an integral part of DEBRA’s A Life Free of Pain appeal and the associated English Channel swim, Isla also supported the charity at the House of Commons reception which also took place in June 2023.

Erin Ward

A woman and man, our ambassadors who support and represent the charity, are sitting on a couch with a baby on the woman's lap. The woman is wearing a striped sweater, and the man dons a beige hat. The baby is dressed in a patterned outfit.

 

Erin is mum to Albi who has recessive dystrophic epidermolysis bullosa generalised severe (RDEB-GS) and lives with her partner, Calum, and Albi in South Wales.

Erin and Calum first became involved with DEBRA when Albi was born. The support they have received through DEBRA’s EB Community Support Team has helped them navigate many of the challenges that EB creates and helped them secure financial support to help cover the cost of attending Albi’s vital EB healthcare hospital appointments in London.   

In the summer of 2023 Erin and Calum hosted the first of what they hope will be many charity balls in support of DEBRA, the first raising over £40,000 to support the EB community.

Erin hopes to use her role as DEBRA ambassador to help raise awareness of EB and the need for improved regional support for people living with all forms of EB, particularly those living in Wales. She also wants to continue to raise funds to support DEBRA’s research programme.

Kate White

 A person with short blonde hair, wearing a red halter dress and silver hoop earrings, smiles at the camera, embodying the spirit of our ambassadors who support and represent the charity.

 

Kate is a mum of two boys and works as a nurse. Most of her career was spent as a wound care specialist nurse before her second son, Jamie, was born with epidermolysis bullosa simplex generalised severe.

Kate and her family’s journey living with EB has been very difficult and heartbreaking at times but her experience as a nurse has made her extremely passionate about working with DEBRA to secure treatments that could reduce the symptoms of EB and ultimately lead to cures.

Kate and her family have been heavily involved in fundraising campaigns, project steering groups, and awareness raising activities for DEBRA. She has also represented the EB community at many events, speaking openly and giving real insight into the harsh realities of living with EB. These events have not only raised valuable funds to help DEBRA support the EB community but have also led to meaningful conversations taking place, and increased awareness of EB.

As a parent to a child living with EB, Kate is very aware of the challenges and pain associated with this condition and the huge impact it has on her family – this gives her the determination and dedication to be the difference. Alongside her fellow ambassador, Jamie, who joins his mum at many of the events, they are determined to take the fight to EB.

If you’re a DEBRA member and interested in getting involved in different ways, including sharing your story, find out more about our involvement network.