Trustees are a vital part of what we do here at Action for XP and we are looking for more motivated and passionate people to join our team. If you would like to be involved in supporting people with XP, both here in the UK and Internationally, we want to hear from you. Keep reading for more information, you can find a link to the application pack at the bottom of the article. What is a trustee? A trustee of a charity is a volunteer who helps lead the organisation and makes key decisions on how the charity is run. A trustee's role is to ensure the charity has a clear strategy and that its work and goals are in line with its vision. A trustee is also a ‘guardian of purpose’, making sure that all decisions put the needs of the beneficiaries first. Trustees have legal responsibility to ensure the responsible operation of the organisation and must discharge their duties in line with the Trustee code of conduct and charities constitution. Who are we looking for? Whether you have previous trustee experience or want to take the first step into a trustee position, we would love your help to grow our important service. We are looking to broaden the diversity of our board and welcome applications from all backgrounds, including those directly affected by XP. This rewarding role would involve participating in monthly board meetings and other involvement where your availability allows. If you have experience with grants and applications, marketing and branding, charity governance, fundraising/funding, and/or important lived experience of XP or any additional experience that you think you can make a difference, then we would really like to hear from you as well.
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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! 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:
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. 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:
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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.