Our Mission

To provide a comprehensive support network for individuals and families affected by the ultra-rare disease, xeroderma pigmentosum (XP), providing equitable access to our charitable services throughout the UK. Providing both practical and emotional support to aid the improvement to the quality of life for individuals and families affected by XP, through all life stages of living with the disease. 

To further conditions for families in underserved regions internationally by engaging in proactive collaboration and knowledge sharing with our peers internationally. To further scientific understanding of xeroderma pigmentosum and work with the international scientific community to progress research and communicate that research to our community. To promote education and awareness both within the XP community and externally within the professional community and general population. 

The promotion of inclusivity, diversity, equality, and awareness, operationally and across our activities.​
Download our 'handy to have' ​Contact Directory here
Hi, I’m Dave Cornthwaite and proud Patron of Action for XP since 2017. Personally, and professionally, I enjoy the good things that come from saying “yes”. I’m an adventurous doer, community creator, keynote speaker, filmmaker, author and I run a campsite too!
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In between long distance journeys without motors I wear a few hats. Alongside hosting a podcast and speaking to audiences around the world about adventure, positive mindset and community building, I run a social enterprise called SayYesMore whose voluntary team run hundreds of free outdoor events each year around the UK.

My wife Em and I are also in the early days of creating a renewables-powered campsite in Lincolnshire where alpacas roam alongside converted buses and a woodland hammock village. It's called the Big Sky Hideaway. 

My mission is to use adventurous stories and ideas to create spaces, events and opportunities to encourage and empower. This passion led to the co-creation of the BIG Book of YES book series, proceeds of which fund important projects for Action for XP. Three books down and this series to date has funded many families to attend Action for XP sleepover camps where the XP community can enjoy their own adventures in a safe and nurturing way. Understanding well the health and well-being benefits of the great outdoors I am passionate to use my voice and platform to help elevate the voices of those who cannot so readily access and these freedoms, and to lend my support to the xeroderma pigmentosum community.

The Board of Trustees 

Dr Richard Barlow

Chair
As chair of the Board of Trustees, a dermatology doctor and a person with xeroderma pigmentosum I would like to think I can see this condition from both sides. This places me in a unique position with which I want to help carry forth the future of Action for XP.

Nicola Miller

Co-founder & Secretary
As a mum of a son with xeroderma pigmentosum I know first-hand the challenges that families face living with a diagnose of XP. I am passionate about ensuring that regardless of life stage or health prognosis, all of our community are able to live their best lives and as such I am the Trustee responsible for delivery of our support and information services. My role is to ensure that everyone who needs us has access to a supporting shoulder and a wealth of relevant and current information to help them navigate the life challenges presented by XP. I also oversee general operations of the charity, ensuring project relevance and delivery.

Rebecca Stewart

Co-founder & Treasurer
As the charity’s financial controller, I ensure that as an organisation we can realise projects that make a difference to our community. As an active trustee I love getting to know our families and I am excited for the future of Action for XP as we look to actively engage in research activities in addition to our support programmes.

Wilbur Stewart

Trustee
Being an outdoors person both in my work as a landscape gardener and my spare time as a keen cyclist and member of Mountain Rescue, I have always been acutely aware of the impact of XP on time spent outdoors in nature, not only on the individual but the whole family. The benefits of spending time together both as a family and with peers cannot be under-estimated and our short break project work is particularly close to my heart. ​

John Roberts

Trustee
With my background in Scouting and in developing products for companies across the world, I am all about enabling individuals and teams to achieve more than they thought they could. The key question is how to enable individuals and teams to do this. As an active trustee in Action for XP, I look at the work we could do with the lens of how to enable individuals or to set-up teams to be successful. We need both, and as we grow we will be better able to support the patients and families and crucially to enable those teams involved in care and research to go further.

Ellie McGowan

Safeguarding Officer
I currently lead a team at a large national charity and am responsible for the operational delivery and supporting the strategic development of volunteering across the organisation, in order to achieve our vision and mission. I have been involved with Action for XP for many years, having previously been responsible for running a residential camp for patients and families of those with XP. I’ve seen first-hand the impact that the community, connection and support the charity provides can have. 

As Trustee I am responsible for ensuring we have robust safeguarding processes to support the work we do; volunteering and particularly how to support and grow the work we do through our volunteers and supporters; our programme of events throughout the year; as well as ensuring all of our policies are up to date, fit for purpose and embedded across the organisation. 

Dr Nettie Dearmun

Trustee
Having spent a career in the National Health Service and higher education, I am now enjoying the opportunities afforded by being an independent practitioner and working in the voluntary sector.  During my career as a Registered Children’s’ Nurse I held a number of posts in clinical practice, education and management, including as Head of Nursing, at Oxford Children’s Hospital and a Principal Lecturer at the University where I undertook a PhD. 

As a Trustee for Action for XP with responsibility for engagement with the NHS commissioned XP clinical team I plan to bring my professional knowledge acquired over the years to help deliver the most comprehensive wrap-around integration we can between clinical care and charitable support.

Volunteers

Farah Akhtar

Family Support Volunteer
Attending a medical setting can be daunting for both new and returning families. It can be a long tiring day for adults, children and their parents and often with difficult health news to digest. I have first-hand experience of this when visiting with my grown-up son. I also have over 10 years of experience in SEND, and supporting the SEND community, with roles as a teacher, support worker and senior learning assistant. It brings me great pleasure to be able to offer support directly to families within the clinical setting as a representative for Action for XP, where I can offer emotional support and sign-posting to our services, harnessing my skills.

Eunice Gelati

Family Support Volunteer
As a grandmother to a child with XP, I am pleased to support Action for XP in helping to keep our children and adults safe with vital UV protection. I am responsible for managing our stock of UV gloves and hats as well as making up the visors and dispatching these to anywhere in the world where they are needed. I also manage the shipping of our Little Ted education resources.

Emily Robertshaw

Research Volunteer
Ensuring that individuals and families have a seat at the table in research is important for families like mine, affected by XP—hope helps us all keep moving forward. It is important that as a service and charity we understand what we do well and where our gaps are in need. Using my experience working in the NHS and my lived experience as a parent to a child with XP I support Action for XP by sitting on their research panel, and taking the lead on developing service evaluation tools.

Emily Ballinger

Social Media Volunteer
As a volunteer for Action for XP, I help to develop and share the social media content. I love seeing the reach and the response that the Facebook and Twitter posts receive and hope that the information we distribute enables members of the Action for XP community to engage and connect with one another. If there is anything that you would like to see more of on our social media channels – please get in touch! We would love to hear from you.

Isobel Owens

Social Media Volunteer
My role as a volunteer is to manage the Action for XP social media pages. I get to share regular charity updates with the aim of keeping the XP community connected and informed of the services we offer, as well as raising awareness of XP. I am also co-camp leader for our annual camps and am responsible for organising activities.