After a challenging 2024, here are a few words from our Trustee, Nicola Miller setting the scene for the year ahead and our plans for bringing the community together We want to take a moment to update you on some of the changes that have taken place at Action for XP over the past year and to acknowledge that during this time, you may have felt a little distance from us. We understand that we may not have provided the level of support you rely on, and for that, we sincerely apologise. The past year has seen significant turnover within our team, with new staff starters who unfortunately were unable to stay with us for long, and a number of pressures on our board and volunteers, due to new babies, retirements, job changes and health issues—all of which have had challenging impacts on our ability to carry out operations to the standard we would have liked. However, we are pleased to announce that we now have two committed new team members, Victoria and Janette, who are both working diligently behind the scenes to bring Action for XP to its fullest potential. Additionally, we are thrilled to welcome new trustees, Nina, Rory and Natalie, who bring invaluable expertise and dedication to our mission. We look forward to introducing you to everyone in the coming months. Looking ahead, we are excited to confirm that we have secured funding for an in-person family event. We know how important it is to come together and connect in a safe and supportive environment, and we’re committed to making this event as memorable and beneficial as possible for everyone in our community. Over the coming weeks, you will begin to see small but significant changes, such as website updates, refreshed branding and resources, and an increased presence on social media. These improvements are part of our commitment to rebuild and strengthen our support for each of you, and we welcome your feedback and suggestions along the way.
We’re excited to share that we’ll be reimagining and rebranding our Virtual Cuppa events to provide the very best support possible—complete with a brand-new name! These upcoming events will include insights from various community members, guest speakers, and focus on meaningful topics like mindfulness, nutrition, and sleep. We’ll also offer a range of event types for specific age groups, including families, teens, and young adults, to ensure everyone feels included and engaged. If you have any ideas for these sessions or would like to speak at an event, we’d love to hear from you—let’s make this a truly collaborative experience! Please know that Victoria and Janette are here for you, ready to answer questions, offer assistance, or simply connect. Don’t hesitate to reach out to them, as we are always here to support you. Thank you for your understanding, patience, and continued support as we work towards creating a stronger, more connected Action for XP. We look forward to sharing this journey with you and are dedicated to making sure you feel the impact of our renewed efforts every step of the way. Warm regards, Nicola Miller Co-founder and Secretary of the Board of Trustees
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Last week David and Libby were pleased to be able to represent Action for XP at the 2024 Annual BAD Meeting in Manchester. It was a great opportunity to talk with medical professionals and raise awareness of XP, as well as make connections with a number of skin care and pharmaceutical companies working in the field of sun protection.
Little Ted got to catch up with some old friends and we got to make some new ones, whilst spreading the word about our services to doctors from across the UK and also from overseas. In particular we hope to be helping some patients in India soon after speaking with a couple of representatives from that country.
We were privileged this morning to spend a few hours in the company of the wonderful women who still own and operate Canterbury Bears as a family business in the heart of the Kent countryside. Canterbury Bears was founded in 1979 by the late Modern British painter John Blackburn, and over 40 years on, the business remains family run by Maude, John's wife, and their daughter Kerstin. Together with a truly dedicated team they design and create beautiful hand-made English bears, including our very own Little Ted! Handmade in Canterbury all their creations are designed and made in their workshops, situated in a small village close to the historic Cathedral City of Canterbury in Kent. Their unwavering ethos is that all their bears are 100% designed and handmade in England. They understand that every bear occupies a special place in the heart of their owner and ensure that each one of their bears, and other animal friends, is truly individual. You can read all about their wonderful work here: Canterbury Bears | Handmade Teddy Bears & Animal Friends It really was a beautiful morning, we had a good old catch up over a cup of tea and got a peak behind the scenes at how Little Ted is created, with so much care. Hand sewn by the most creative individuals, each little stitch is placed with love. He really is a special little bear. And he is not the only special bear made by Canterbury Bears either, they also produce Buttony Bear, who is given out to children with a stoma, and just like our own Little Ted he aims to help children to feel a little more understood. We got to understand how Little Ted is bought to life, in the same traditional way as their bears have been for nearly 50 years, and now we don't just believe he is special, we KNOW it! A new partnership to provide valuable mental health support to those affected by XP and their families.May is Mental Health Awareness Month and we are thrilled to be able to officially announce the launch of this new project, delivered by Action for XP and Rareminds, and funded by the British Association of Dermatologists. Rareminds is the first specialist, non profit, rare disease counselling and psychotherapy service in the UK (and possibly globally), their team has been providing online counselling and wellbeing services for rare disease charities since 2014. Please see the flyer below for some additional information, and if you would like to know more reach out directly to lead counsellor Zubyda via email on [email protected], marking 'Action for XP' in the subject box. We are so grateful to Rareminds and the BAD for making this important project come to life. Find out more about Rareminds here: www.rareminds.org/ *Please be aware that at this time we are only able to extend this service to UK families.  A wonderful weekend at Wilmington Priory.
Louis was the first XP patient in the UK to receive cochlear implants.
Louis is 17 and he has XP type D. He was diagnosed with XP aged 2 and within a year of his diagnosis it was picked up through his delayed speech and development that he had mild hearing loss. As with any degenerative condition the loss progressed over time, and by the time Louis was 14 he was classed as being profoundly deaf. Hearing aids were no longer helping and Louis was within the thresholds to be considered for cochlear implants in both ears. This was a huge decision for the family as there were no other UK XP patients with this level of hearing loss or with cochlear implants that we could relate to or discuss the experiences with. However, after lots of meetings with the professionals and with as much information as they could digest they decided, with Louis, to go for it. Louis was booked into have his operation in 2019, but due to covid this was postponed to early 2021. The family were as prepared as they could be for this, including having a talking device for Louis, as it can take weeks, or even months to regain hearing and speech. Against many odds Louis picked up hearing and regained his speech incredibly quickly, everyone was so proud of him and pleased with how successful this had been for him. Three years on and Louis hearing is still being supported well through wearing his cochlears. This doesn’t replace hearing, and with cognitive delays and a learning disability things aren't always easy for Louis. Last year Louis was successful in being given a hearing dog through the Hearing Dogs for Deaf People charity. Three years since applying Harper was worth the wait, she helps Louis to hear sounds and alerts him to dangers, she is also a comforting companion, supporting his mental health and wellbeing. As we draw near the end of 2023, what better time to reflect on our impact... |
Letter from our ChairThe past 12 months have flown by; July 2023 marked one year of Action for XP. Nicola, Nettie, Rebecca and regular volunteer Eunice, continue to make great impact through direct patient support both nationally and internationally. The XP clinic in London continue to deliver excellent care to our patients and their families affected by XP, including myself. We look forward to continuing and building on this working relationship in the years to come. As our community grows, we have had to enforce some changes to our services to ensure sustainability of the charity. We thank our community for their patience and understanding in these matters which allows us to deliver the core services to greater numbers of people and ensure long-term continuation of Action for XP. This year has also seen the launch of a wonderful comic focusing on the neurological aspects of XP and the transitional phase of childhood and beyond. We thank the team behind this based in Dundee and beyond. Lastly, a heartfelt thank you to all the inspirational individuals who continue to fundraise and raise the profile of XP within the UK and abroad. We are still not out of the post-pandemic woods which makes everything considerably more challenging and we very much recognise the great efforts of those people who continue to persevere and set leading examples for the rest of us. Richard Barlow Chair of Trustees, Action for XP |  Download 2023-2023 Report by clicking image above. |
The Future
As we look to the year ahead there is so much more we want to achieve.
With an ever-increasing workload putting considerable pressure on our volunteers we recognise the need to address this. Our hope is to be able to bring some part-time staff into the organisation in the year ahead, which, will help alleviate these pressures and allow us to deliver more for our families.
Our priorities for 2023-2024 will include the following:
With an ever-increasing workload putting considerable pressure on our volunteers we recognise the need to address this. Our hope is to be able to bring some part-time staff into the organisation in the year ahead, which, will help alleviate these pressures and allow us to deliver more for our families.
Our priorities for 2023-2024 will include the following:
- Recruit a new fundraising officer to help us take a more planned and strategic approach to raising funds and securing our financial sustainability
- Recruit support on day-to-day operations to alleviate pressure on existing volunteers
- Develop phase 2 of the teen comic project and expand youth engagement
- Continue to build on our monthly virtual get togethers
- Continue engagement with the community to develop a calendar of important in-person events to suit the needs of our diverse community
- Build on the success of the pilot project and secure funding to roll out our Rare Minds counselling programme fully
Download our April 2022 - Marsh 2023 Impact report HERE:
To support our valuable work please
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Louis and family enjoy an adventure weekend thanks to Action for XP and the Landmark Trust
This 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.
 | This was a great opportunity to spend quality time together as a family and the February getaway meant it was better suited for Louis’ condition due to the low UV. |
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!
| | There are so many things that we loved about this property! Overall, we just loved how quirky the building was – we lovingly re-named it the wibbly-wobbly house due to the bumpy un-even floors and stairs. It really made us laugh, and felt like a fun-house at the fair. The ruins were so amazing up close, something we all were impressed with. We loved exploring outside and finding all the nooks & crannies, including the old storehouse underground & the faces in the archways. Outside the kitchen door led us straight out to part of the ruins that was undercover. This was such a remarkable space. We got candles from a local shop and put them in one night to get a sense of how this space was used in the past. It was thrilling to see the faces on the archways become animated in the candlelight and the cold wind blowing flickered the shadows and sent chills down our spine! Inside, our favourite place was sitting in the quaint chair in the corner of the landing at the top of the stairs, which looked out on the most stunning views. This calm, tranquil and inviting space seemed always occupied by one of us throughout our stay. |
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.
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 wanted to spend as much time as possible at the house to really appreciate this opportunity we had been given. |
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.
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.
 | We were overwhelmed by the generosity shown towards our family by this amazing donor. We just don’t seem to have the words to thank them quite enough for this opportunity. |
 When offered the chance to complete RideLondon for Action4XP I didn’t hesitate, it’s a great safe event on closed roads through London and Essex. My plan was to Ride the 60 mile route and then cycle back home to Kent. Unfortunately I got caught up in the event and therefore had to finish the 100m route. | Wayne Bishop has once again taken to his bike to show his continued support for the XP community. Over the last decade Wayne has raised funds for XP on numerous occasion making him our most prolific fundraiser to date!  |
Thank you Wayne for your continued support.
It is greatly appreciated xx
https://www.justgiving.com/fundraising/wayne-bishop4
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: [email protected]
Please drop us an email to: [email protected]
 | 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: [email protected]
Please drop us an email to: [email protected]
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