​We are looking to fill two key positions.

Could you be our next: 

Operations Officer responsible for the day-to-day operational activities 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.

Or maybe your passions lay in fundraising and event management. If so maybe you could be out next:

Fundraising and Events Officer 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.

These are both exciting roles working with a motivated and committed Trustee team, where you will be driving forward the organisations mission and making a big difference!

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.

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.  
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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!  

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. ​

Action for XP has been a charity close to my heart for many years and I am delighted to now be part of the team driving the organisation forward into 2024 and beyond.

As Community and Events Officer I will be working hard to support our community with both our existing services and programmes and in the creation of new community focused initiatives. I will also be driving community fundraising and awareness raising to amplify our voices and support our work.

Looking ahead, I will be designing our programme of events; both virtual and in person, and I hope to have the opportunity to meet many of you personally through this, as we aim to bring families back together for important peer-to-peer connections.

I’m obsessed with anything relating to child development and mental health and as such I am excited to help deliver these projects which directly support the XP community, including a new mental health initiative launching soon (watch this space).

In my spare time you may find me in the theatre, or singing at the top of my lungs with my two daughters on a road trip.

I am looking forward to getting to know you all, and in the meantime, if you have anything you would like to see on our social media or newsletter, an have idea to inspire others, or you just what to reach out for a chat you can contact me via my direct email: [email protected]
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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.
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Our priorities for 2023-2024 will include the following: