We are delighted to introduce our newest team member.Please join us in giving a warm welcome to David Urquhart, our brand new team member who will be looking after the day to day operations of Action for XP and helping us secure a strong future for our community as we move forwards. Here's a little introduction from David:
0 Comments
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 zubdya@rareminds.org, 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. Say hello to Libby: |
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
DONATE via Just Giving or PAYPAL
Action for XP are hiring:
Could you be our new Fundraising and Events Officer?
As part of our long term strategy for succession planning we would like to recruit talented individuals to join our team. Helping us continue to make a difference long into the future.
As our Fundraising and Events Officer you would be responsible for driving our short and long-term fundraising and events strategy. This would involve creation and delivery of this strategy. The role will involve a close working relationship with our Operations Officer and our Board of Trustees.
This is an exciting role working with a motivated and committed Trustee team, and a wonderful opportunity to make a big difference!
This is an exciting role working with a motivated and committed Trustee team, and a wonderful opportunity to make a big difference!
Key Responsibilities
Click below to access the full job description | Funding & Administrative Roles: Keep in close contact with finance and projects Trustees to identify areas for grant funding. Source and complete grant applications Source and book places on fundraising events. Create content and liaise with social media volunteers to recruit for event places Set up and monitor fundraising portals and pages Events: Organise own fundraising events. Creation of promotional materials. Communicate / market events. Create fundraising packs for individuals partaking in events. Monitor other fundraising activities and send thank you letters to fundraisers a) Planning: Book venues and communicate with venue including: o collating invoices o provision of relevant policies/procedures o manage communication including; liaising re schedules, insurance Research and book activities; design event programme. Research and book speakers / education. Create and maintain booking system for attendees. Organise attendee travel (family, speaker etc). Create and assemble attendee/family welcome packs and information. Source and organise food and refreshments. Collate parental consent forms. Purchase all materials needed for activities. Management of event budgeting b) Event Participation: On site set up and close down. Organise transportation of Action for XP materials to and from events c) Post-Event Roles: Collect and collate post event feedback. Process volunteer and other attendee expenses. Collate metrics and report on activities and patient experience in preparation for NHS England review and Board meetings Oversee Volunteers: Advertise volunteer roles. Organise interviews and process references. Conduct and lead volunteer inductions (with support from Safeguarding Trustee). Ensure ongoing volunteer engagement. Support Operations Officer in maintenance of volunteer database. |
Key Requirements
We are looking for an organised, outgoing individual who is able to work independently. Experience in community fundraising and grant bid writing is essential. Experience in events planning is desirable.
- Proven track record in grant bid writing and community fundraising
- Organised, self-motivated and a flare for problem solving
- Experience in events planning is desirable
- Good working knowledge of Microsoft particularly Word and Excel
- Good coordination skills
- Working knowledge of Canva or other creative software is desirable
- Confident in engaging with Board members, Beneficiaries and the general public
Key Features
- 20 hours - remote working
- Hours of work - Daytime hours TBA
- Salary pro rata £26k - £32k full time equivalent (depending on experience)
- 28 days pro rata holiday entitlement
- 3 month probation period
Notes:
Occasional evening and weekend working to accommodate international beneficiaries and events
4-5 conferences and/or events (primarily UK, but may involve international) per year
This opportunity is only open to UK based applicants and we can only consider candidates for this role who have the current legal right to work in the UK.
Occasional evening and weekend working to accommodate international beneficiaries and events
4-5 conferences and/or events (primarily UK, but may involve international) per year
This opportunity is only open to UK based applicants and we can only consider candidates for this role who have the current legal right to work in the UK.
If you would like to find out more about this role ahead of applying please contact our team at: admin@actionforxp.org
We look forward to hearing from you!
DEADLINE: MONDAY 11TH DECEMBER 5PM GMT
Action for XP are hiring:
Could you be our new Operations Officer?
As part of our long term strategy for succession planning we would like to recruit talented individuals to join our team. Helping us continue to make a difference long into the future.
As our Operations Officer you would be responsible for the day-to-day operational activitites of the organisation focused on patient support and project delivery. The role will involve a close working relationship with our Fundraising and Events Officer, and our Board of Trustees, and will be a pivotal role within our small but mighty organisation.
This is an exciting role working with a motivated and committed Trustee team, where you will be driving forward the organisations mission and making a big difference!
This is an exciting role working with a motivated and committed Trustee team, where you will be driving forward the organisations mission and making a big difference!
Key Responsibilities
Click below to access the full job description | Patient Liaison: Respond to email enquiries. Liaise with schools. Work in conjunction with Clinical Liaison Trustee to report to multidisciplinary clinic in London (no clinical knowledge or responsibility expected or required). Process and send thank you acknowledgments and bereavement cards. Attend key awareness and engagement events. Patient Support: Coordinate patient resource requests. Communicate with courier and process and submit customs paperwork. Liaise with volunteers on fulfilment of patient shipping requests. Renew DHL agreements for shipping. Complete DLA / PIP (templates available) and tribunal paperwork. Support blue badge applications. Process patient protection grants. Order stock in liaison with Treasurer. Liaise with international patient groups for collaborative aid or project efforts. Project Delivery Work closely with Trustees to execute delivery of projects and track progress. Communicate funding needs to Fundrasiing Officer. Cooridinate input from project contributors. Disseminate project output via dedicated campaigns and communications. Create feedback processes and collate and report insights to Board. Administrative Duties: Attend Board meetings, generate agenda, take minutes and distribute. Generate Trustee and impact reports. Disseminate information to volunteers. Create Trustee Logs for expenditure. Maintain records of training and DBS for staff, volunteers and Trustees. Create monthly newsletters. Oversee and execute social media campaigns. Manage social media channels and liaise with social media volunteers. Work with Trustees to maintain and ensure website remains current. Support the Fundraising and Events Officer in delivery of events. |
Key Requirements
We are looking for a self-motivated, organised and driven individual who is able to work independently. Due to the family support nature of this role applicants must be caring and empathetic by nature and able to handle situations of a sensitive nature.
- Organised, self-motivated and a flare for problem solving
- Able to project manage/coordinate multiple workstreams
- Good working knowledge of Microsoft particularly Word and Excel
- Good working knowledge of social media platforms Facebook and Twitter
- Working knowledge of Canva or other creative software
- Confident in engaging with Board of Trustees and Beneficiaries
Key Features
- 20 hours - remote working
- Hours of work - Daytime hours TBA
- Salary pro rata £26k - £32k full time equivalent (depending on experience)
- 28 days pro rata holiday entitlement
- 3 month probation period
Notes:
Occasional evening and weekend working to accommodate international beneficiaries and events
4-5 conferences and/or events (primarily UK, but may involve international) per year
This opportunity is only open to UK based applicants and we can only consider candidates for this role who have the current legal right to work in the UK.
If you would like to find out more about this role ahead of applying please contact our team at: admin@actionforxp.org
We look forward to hearing from you!
DEADLINE: MONDAY 11TH DECEMBER 5PM GMT
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: fundraising@actionforxp.org
Please drop us an email to: fundraising@actionforxp.org