Dear friends,We hope this finds you all well. We’re writing to you with urgency and from the heart. Action for XP exists to support individuals and family affected by Xeroderma Pigmentosum. Our reach extends across the whole of the UK and to many under-supported regions of the world. We have always been immensely proud to provide our services free of charge because we know how important they are. But right now, we’re facing one of the most difficult periods in our charity’s history. Like many small UK charities, we are under immense financial pressure. The cost of everything is rising and so is the cost of delivering the vital work we do. To put it into perspective:
We all know this isn’t a luxury, It is essential, which is why we work tirelessly to do our best to maintain each of these vital services. We don’t receive any NHS or government funding, and over the last decade the majority of funds have come from community fundraising, most significantly from our founder’s friends and family, and small grants. However, these no longer cover the cost of the provision of the physical items being requested by you, our community, let alone the core infrastructure costs of delivering this service day-on-day. We are working tirelessly to secure every possible grant, but the landscape has changed. Many funders are stretched to the limit, and long-standing grants are no longer available. In the last week alone, we have trawled over 500 possible grants, and only five of these we are eligible to apply for, and after hours of work it is likely we will secure none of these—such is the highly competitive nature of grants where thousands of small charities are all vying for the same pots of money. The truth is, we are an ultra-rare condition community and that does not attract outside help. It’s just us and you. So today we are writing to ask for your help. After 13 years of uninterrupted service and helping families, now it is time for us to ask for help. If you or someone you know could fundraise, donate, or even just share who we are and what we do to your wider networks, it would make a real difference. Whether it’s a sponsored walk, a bake sale, a gaming marathon, a workplace fundraiser, a regular bank standing order or nominating us as your employer’s Charity of the Year, we need YOU. Every single action counts. Every penny raised helps us stay open and keep supporting the XP community. Without your help, we will be unable to maintain operations at the level they are today, and our future will be jeopardy. We know that life is hard right now for many. But we ask that if our work has helped you or someone you care about, or you care about the longevity of our service, please act today. We don’t want to close our doors. We want to keep supporting you long into the future. But we can only do that if we all pull together. Thank you for reading, for caring, and for helping us. With hope and gratitude, Richard Barlow Chair of the Board of Trustees, Action for XP Email: [email protected] Web: www.actionforxp.org Facebook & Twitter: @ActionforXP 
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