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NEWS

Co-creating educational resources to empower young people

2/27/2023

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London, UK 28th February 2023 – Today Action for XP, in collaboration with the University of Dundee’s Scottish Centre for Comics Studies and the teen XP community launch a new resource to support and empower young people with xeroderma pigmentosum (XP)

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XP is a complicated condition, the management of which involves extreme avoidance of UVR. This means it can be a very visual condition and speaking with our teen community we realised they would really benefit from a resource that could both help them understand their condition in an age appropriate and engaging way and be a valuable tool when talking about their condition with their peers. This project builds upon on our Little Ted project which, provides age-appropriate education for children under 12.
Nicola Miller Action for XP project Lead.

Co-creation – a vital strategy for successful patient and peer education

Working in collaboration with the Scottish Centre for Comics Studies at the University of  Dundee, and a focus group of young people and their parents, Action for XP believe that engaging educational tools make an important difference in changing attitudes.

Our community often receive comments such as ‘why are you dressed as a spaceman or beekeeper’ or ‘are you a vampire’. This is upsetting enough for adults but most of our community will have been dealing with these types of comments since childhood. It was vital to this project that our young community were involved from the start to provide their experiences and direction to the creative team. Giving young people the tools to advocate for themselves is an important step as children grow, spend more time away from the security of parents and transition into a more independent stage of life.
Richard Barlow Action for XP Chair
​Today sees the launch of the first phase of this project. The XP and Me comic includes the first three themes with many more planned. These initial themes cover “information on XP”, “what XP is and what it isn’t” and “neurology and XP”. The comic was developed by a team that includes Professor Christopher Murray and Dr Megan Sinclair, with artwork by comic artist Vanessa Cittadino.
Since 2016 the Scottish Centre for Comics Studies has worked with partners to co-design informational comics, many of them addressing misunderstood illnesses, such as fibromyalgia, ME, and coeliac disease. It has been a privilege to work with comics writer Dr Megan Sinclair and artist Vanessa Cittadino, both graduates of the Comics Studies programme at the University of Dundee, and the wider team, to help bring these informative stories about XP to life.
Professor Christopher Murray (Director of the Scottish Centre for Comics Studies, University of Dundee)
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  The core idea of this project was to let the voices of young people with XP be heard. Comics are an ideal platform for these voices, where creativity, empathy and storytelling can be combined into an accessible and striking form. We hope that youth people living with XP will be able to connect with the comic, and see themselves reflected in the stories being told. Equally, the comic will allow people without XP to understand what XP is and isn’t and be able to better engage with the XP community. We are delighted to be able to launch this comic on Rare Disease Day and are grateful to Action for XP and the National Lottery Awards For All Scotland for funding this project.
 Dr Paul O'Mahoney (formerly of the University of Dundee)

A project that plans for the future

This is just phase one of a larger project. We have designed this project so that we can expand the topics and add to the resource over the coming months as our youth community continue to engage and let us know where there are gaps in education. It is important that educational projects don’t become static and can be built upon, and we are excited to see this project grow.
Nicola Miller, Action for XP
With more themes to follow and translations planned this resource will be one that will continue to support this young XP community as they navigate life living rare.
The comic is really realistic, very beautiful. I hope that people will now know what XP is for real!
Noha Chaabi, young person with XP, France
​You can find XP and Me HERE.  https://bit.ly/XP-And-Me 

About xeroderma pigmentosum

Xeroderma Pigmentosum (XP) is an ultra-rare genetic condition characterised by an extreme sensitivity to ultraviolet radiation (UVR) which affects less than 150 patients in the United Kingdom and equally low numbers around the world.

Patients with XP lack the DNA repair mechanism to repair damage caused to the skin by exposure to ultraviolet (UV) light, in particular UVA and UVB and are at a 10,000-fold increased risk of developing skin cancer than the general population, often from at a very young age. In addition, around 30% of people with XP also develop neurological abnormalities which can range from learning difficulties, hearing loss and eyesight problems to loss of gross motor skills and mobility.

For more information visit www.actionforxp.org For more information about the educational comics produced by the Scottish Centre for Comics Studies visit www.scottishcomicstudies.com/public-information-and-educational-comics/.

Contact

To arrange an interview with Nicola Miller or Richard Barlow please contact Rebecca Stewart on Rebecca@actionforxp.org
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This project is a in collaboration between Action for XP and the University of Dundee’s Scottish Centre for Comics Studies.
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The project is joint funded by Action for XP and the National Lottery Awards For All Scotland​
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Supporting families—letter from our Chair

1/20/2023

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Dr Richard Barlow, Chair of Trustees, Action for XP
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XP patient and ambassador

​Dear UK families,

This letter has been sent to you to explain the new system for claiming reimbursement for costs incurred when attending XP multi-disciplinary team appointments at St Thomas and Guys Hospital at the Rare Disease Centre, London. The new system will come into effect as of January 2023.

Over the last year, Action for XP has evaluated total expenditure across all projects supporting the XP community. This has highlighted that, in addition to provision of photoprotection such as hats, gloves and UV film, the most significant cost to the charity is travel and accommodation for attendance of the National XP Clinic.

It is predicted that by the end of the year nearly £25,000 will have been spent on these travel and accommodation costs alone.  The amount claimed ranges from around £50.00 to in excess of £600.00, with the average cost per patient being £480.00. This, coupled with late notice requests, incurring higher costs and the operational difficulties created for our volunteer team, means that this situation is not sustainable if we are to protect the charity and continuation of all of our vital services.

Although there is some funding (circa £3,500) from NHS England this is unlikely to increase significantly and so, given the rising costs of travel, accommodation, and applicant claims it has been necessary to streamline the claim process, review eligibility and review what is fair and reasonable for our families in the current climate.

This week, a new system has been introduced (which supersedes previous arrangements) aimed solely to support those individuals/families who:
  • are unable to afford the cost of travel to their appointment at the Rare Diseases Clinic, St Thomas and Guys Hospital, London (National XP Service, London)
  • have not received  reimbursement from any other scheme i.e  NHS Healthcare Travel Costs Scheme (HTCS), and
  • are not in receipt of other support i.e. DLA or PIP, but still consider that they are in a situation of severe financial hardship. 

So that our grants are only utilised when absolutely necessary we ask that, in the first instance you apply to the NHS Healthcare Travel Costs Scheme, before you request reimbursement from Action for XP. This can be done very simply and details are enclosed to guide you through this process.

Families/individuals will now be responsible for booking travel arrangements themselves and apply for the grant after their clinic appointment.
Subject to meeting the eligibility criteria and being in receipt of valid documentation, you can apply for a travel grant via our online application form for reasonable travel, and in some circumstances, accommodation.  The maximum awarded fund will be £250.00 - dependent on distance from home to clinic.  Payments will be made with 3-5 working days of successful application.

Attached is a FAQ sheet which should answer all your questions and guide you through the new process, it  also contains useful information about other grants available, for example the HTCS. https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/
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This decision has not been made lightly and has been taken following discussion and with full knowledge and support of the clinical team.
 
With best wishes
Action for XP team
 
Yours faithfully
Dr Richard Barlow
Chair of Trustees for and on behalf of Action for XP
Senior Dermatology Registrar – West Midlands, UK

Download our new Medical Travel Financial Assistance Advice guide HERE 
Queries to admin@actionforxp.org

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Looking ahead to family events for 2023

12/16/2022

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Ellie McGowan, Trustee for Action for XP, ​Events and Safeguarding Officer

I’m Ellie and I’m the Trustee responsible for Safeguarding and Events here at Action for XP. I was previously a volunteer for XP Support Group for 10 years, with responsibility for planning and running Owl Patrol for seven of those. I wanted to use this as an opportunity to say hi and introduce myself, as well as let you know what we’ve got planned for events over the coming 12 months.
 
As you know, much of our time during the last six months of 2022 was focused on bringing together the XP Support Group and Teddington Trust, including developing our mission and values, as well as our new branding and logo. We have also been dealing with an unprecedented level of enquiries which have needed our priority attention. This has meant that unfortunately there wasn’t sufficient time left for us to properly focus on, and plan any imminent events.

As a result of this, we made the difficult decision to postpone our Big Teddington Sleepover in Autumn 2022 and Owl Patrol in February 2023. We know that for many of our families, these events are a highlight in your yearly calendar and I know, having been a part of such events for many years, just how special they are.

 But fear not, this is certainly not the end! In joining together two well established charities, we now have the opportunity to also bring together the best of both organisations, including events. ​
During the first half of 2023 we’ll be planning a series of further consultations with as many of our families as possible to better understand what you liked best from previous events delivered by both organisations, as well as find out what you want to see planned in the future. We want to make sure that our time, resources and funding is spent planning and delivering the right events, that continue to meet your needs and wishes.
 
We also want time to have time to meet with our incredible volunteers, past and present. We simply couldn’t deliver our events without them and so their input into our planning will be crucial to being able to develop and deliver a programme of events throughout the year. 
 

We’ll be in touch early next year to let you know how you can feed into our consultations and we look forward to speaking with you then. However, if you have any thoughts in the meantime please do get in touch; you can drop me an email via ellie@actionforxp.org
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Running and walking for XP

9/19/2022

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September gives us a fundraising boost 

On Monday 29th August, husband and wife, Steve and Sandra Webb set off on an 160 mile home-to-home walk to raise funds for Action for XP and the families they support.
 
The walk was planned by Sandra and Steve to mark 25 years as founders and trustees of the XP Support Group, and to celebrate the joining together of XPSG and Teddington Trust, to form the newly branded Action for XP. The walk took them from their current home in Prestwood, Buckinghamshire, to their respective childhood homes in Wolverhampton and Birmingham. Following the Slow Ways route, they averaged an impressive eight miles a day over 20 days, all coming to an end on Saturday 17th September, where they were met at the finish by friends and family.
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 We both thoroughly enjoyed the experience of walking from our current home to the places where we were born. We saw so much beautiful countryside that we would normally miss when driving the route, and were amazed to see so much wildlife - even herons on the canal towpath as we approached Wolverhampton! It was a pleasure to mark our retirement from the XP Support Group completing such a memorable journey. Raising funds for Action for XP was an added bonus.
To date the walk has raised over £1,500 which is an incredible sum—THANK YOU Steve and Sandra!
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Donations are still being accepted: https://www.justgiving.com/fundraising/sandrasteve-webb7
 
This concludes a wonderful month for fundraising for us, which saw Chris and Krisi, from the MET Police, take part in the London Big Half on 4th September, which raised over £700.00. Both did a tremendous effort with Krisi securing her new personal best—way to go Krisi!

Thank you Chris and Krisi for stepping up to the challenge and supporting our vital work x 

After two years of very limited ability to fundraise during the pandemic, these funds have never been more important to us as a small, solely volunteer run charity. We welcome your support in bringing us your ideas, time and energy to help us fundraise to secure our services now and in the years ahead.  Get in touch now, to discover how you can get involved—we would love to hear from you.
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Teddington Trust gets a new name

6/20/2022

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Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission 
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London, UK 1st July 2020 – Scottish charity Teddington Trust announces new name and new look to launch its next 10 years of service to people affected by the ultra-rare condition xeroderma pigmentosum (XP). ​

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