Louis and family enjoy an adventure weekend thanks to Action for XP and the Landmark TrustThis year, Action for XP were successful in securing a free weekend stay in one of the Landmark Trusts stunning properties, as part of their 50 for FREE initiative. Following a ballot process Louis Brewin and his family were selected to enjoy a weekend in the country and sample the delights of Wilmington Priory. This is their story of an action packed weekend.
We arrived in the dark so were limited to how much we could take in, but we felt really intrigued walking into such an old building. We were all nervous yet eager for the adventures that awaited. When we woke in the morning, we were all taken aback with the grandeur of Wilmington Priory and we couldn’t wait to explore the house, ruins, grounds and local area. We couldn’t absorb it quickly enough. We were so full of excitement and curiosity, it felt like waking up on Christmas Day! 
We had researched about the Long Man of Wilmington before arriving and were looking forward to following the trails past the figure and all the way to the top. In one of the Landmark Trust booklets that had been put out for the children, we read the story about a young boy that worked at the priory who would have fun with his friends running up the hills when they had free time. We couldn’t wait to follow in his footsteps so set out on a clear day for our exciting quest. We past the enormous monument and carried on up the chalk hills, right to the top. The views were spectacular and we could see for miles around. It was a 360 viewpoint that we took our time to comprehend and catch our breaths. There was a bowl shaped piece of land right at the top, which, with its steep slopes was asking for it be rolled down… just like we imagined the boy and his friends would have done in the story. And that’s just what Louis, Liliana and Lee did – we all had so much fun and laughed the whole time that day. A memory that we will treasure forever and have spoken and laughed about so much since.
We always have a great time away as a family and try to make the most of any experience. Our stay at Wilmington Priory certainly reinforced this. We had such an incredible time away together, making amazing memories that we will treasure forever. It was great to switch off from the modern world, if only for a few days, and take in the special opportunity we had been given. The fun, the laughs, the smiles, the memories will last forever. We connected so well on this holiday and really enjoyed every part of our experience to the maximum. We will always remember this special holiday and all that we learned. It was an amazing opportunity to stay in one of the most spectacular locations we’ve ever experienced. The history, charm and wonder oozes from ever part of this priory and filled our family with so much enjoyment. Treasured memories spent connected as a family having so much fun and adventure. The Landmark Trust is an amazing charity that creates such a unique opportunity to stay in some of the most breath-taking properties. The incredible restoration work they do means history is not lost and the buildings can live on forevermore wit people getting to experience their own piece of history.
0 Comments
Thank you Wayne for your continued support. |
 | This spring, Shauna raised a wonderful £115.00 for Action for XP by hosting a bake sale. Raising important awareness and funds for our vital work. |
 | My brother got diagnosed around a year ago and I've seen how hard it has been for him before he got the support he needed with Action for XP. He was having surgery to remove cancerous moles on his face and we had no clue why it was happening to him. Then we found out he had XP and it seemed like his life changed in a snap - more surgeries and more checks. Action for XP provided him with very much needed and important support and protective clothing for him to be able to go outside and even sorted out special window film so he was safe inside the home. I can't thank you enough for all the help he and my family have received throughout this whole process. We couldn't of done it without the support or service from this amazing charity." |
If you would like to support our work by organising your own fundraising event, we would love to hear from you.
Please drop us an email to: fundraising@actionforxp.org
Please drop us an email to: fundraising@actionforxp.org
On May 25th 2023, Eddison (aged 11) was invited, along with other inspirational children from his region to attend the Try Angle Awards ceremony. Here he was awarded the Try Angle Community Action award, which was given in recognition for his considerable youth advocacy work in the field of rare disease, and in raising awareness for the ultra-rare condition, xeroderma pigmentosum. The award was chosen by a panel of judges who were greatly impressed by Eddison's achievements.
| Below is copy of the citation, which accompanied presentation of his award: |
| Eddison deserves recognition for his community action due to his considerable contribution to the rare disease community. Since a young age, Eddison has been a youth Ambassador for Action for XP where he has shared his experiences of growing up with the ultra-rare disease xeroderma pigmentosum. He is the inspiration behind the Little Ted project, which has been sent to over 1,000 children living with XP globally, and which has been used in schools to educate 1,000s of school aged children about rare diseases. He's worked hard to raise awareness for XP through campaigns, including with Children in Need, and via participation in events. Furthermore, Eddison is an active member of the RARE Youth Revolution, where he takes part in focus groups, social media campaigns, and contributes a regular column. In his column, Eddison shares his experiences, giving advice and inspiration to other young people living with rare disease, motivating them to push their own limits, and strive to make the most out of every opportunity, despite their own conditions and the challenges they present. His impact on this global rare disease youth community is significant. |
 |  |
I am exceptionally pleased to hear of Eddison's award in recognition of his youth advocacy work! Eddison has done some tremendous work raising awareness for rare diseases at RARE Youth Revolution. He has facilitated interviews through our RARETalks series, written articles in his regular column, Eddison Explores and conducted Rare Quiz and Mythbusters sessions with his brother Raife, at CRDN's bi-annual RAREfest. I am pleased to see his achievements have been acknowledged and cannot wait to see what he brings to us next!
Chelsea Wong, RARE Youth Revolution, youth coordinator
Eddison is a fabulous young man who has done much to raise awareness for other people with XP and their families, not least being the inspiration behind the little Ted series. His approach to daily life is exemplar of the resilience we all strive towards. We look forward to seeing more of Eddison and his fantastic brother Raife as they approach the next chapter of their life.
Dr Richard Barlow, Chair of Trustees, Action for XP
We are very proud of all that Eddison does to demystify living with XP. To say he was chuffed with his award would be an understatement, and it is wonderful for us as his parents to see him recognised in this way. He does such a lot to put himself out there in the hope to inspire and encourage others and he is the direct inspiration to so much great work that had come from his diagnosis. We are eternally proud of him.
Eddison's mum and dad, Nicola and Andrew Miller
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)
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) |
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 |
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/.
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
This project is a in collaboration between Action for XP and the University of Dundee’s Scottish Centre for Comics Studies.
The project is joint funded by Action for XP and the National Lottery Awards For All Scotland
The project is joint funded by Action for XP and the National Lottery Awards For All Scotland
 |  |  |
 | Dr Richard Barlow, Chair of Trustees, Action for XP |
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:
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/
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
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.
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/
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
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.
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
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
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.
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.
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!
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
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.
Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission
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).
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).
Archives
July 2023
June 2023
February 2023
January 2023
December 2022
September 2022
June 2022
RSS Feed