Looking Back, Moving Forward: A Message from Our Charity Director

Dear Friends,
As we approach the close of 2024, I wanted to take a moment to reflect on the year gone by and look ahead to the future. This year, we have seen growth, resilience, and an unwavering commitment to the NF community, despite the challenges we have faced.

Proudest Achievements

We celebrated the return of our NF medical information days, which had to be paused during the pandemic. These events provide vital medical insights and create a sense of community that is so important for our families. We’ve also seen significant growth in our social media presence, particularly through campaigns such as the one featuring GB Parasprinter Thomas Young MBE, our incredible Patron. His efforts to raise awareness about NF have brought our cause to new audiences, and together, we’ve spread the message of inclusion and understanding. We reached over 3.2 million people through our “Everybody is Born a Champion” digital campaign, a collaboration with RBH Creative Communications. Thomas, of course, went on to defend his T38 100m Paralympic title in Paris, proving that with the right support, anyone can achieve their potential. We are incredibly proud of everything he has achieved this year.

In addition, through the powerful and difficult stories shared by people like Oliver Bromley, we have highlighted the importance of fighting prejudice and discrimination in the disabled community. These stories have sparked conversations and encouraged change, amplifying the voices of those living with visible conditions like NF.

The Impact on the NF Community

This year, we have increased our community engagement significantly, especially through our NF1 information days being live-streamed. These events continue to bring together individuals and families, allowing for valuable peer support and education. While there is still much to do, the power of the NF community remains a driving force behind our advocacy efforts.

Challenges We’ve Faced

We have not been without our challenges. Economic difficulties and fundraising hurdles have posed huge barriers, but we remain committed to our mission. We have streamlined our fundraising efforts, revamped areas of our website, and redirected resources where they are needed most. These adjustments, while tough, allow us to continue providing front line support, the key message heard from the community.

Stories from the Heart

Our work has always been about people, and this year was no different as seen by the stories you have shared with us. Irfan’s story, starting with his diagnosis in 2016 and his journey towards finding a community, is a testament to the power of connection. He shared that discovering Nerve Tumours UK “has been life-changing.” Likewise, Andrea’s journey from misdiagnosis to finding the right specialists through our network, is one we are incredibly proud of. She is now a passionate advocate for NF1 awareness and shares her story to educate medical professionals.

Georgia, who embraced her uniqueness and went on to write a dissertation on the impact of NF1 on education, continues to inspire others. She proudly says, "Living with NF1 has equipped me with resilience and confidence," and her efforts will help create lasting change in how NF1 is recognized in educational settings.

Liz, from Yorkshire also shared her deeply personal story, reminding us of the power of determination and hope. Diagnosed with NF1 as a child, Liz has faced challenges throughout her life, from painful tumours to learning difficulties. Yet, she has found strength in connecting with others and advocating for awareness. Her inclusion in a Rare Disease Day briefing to government officials is helping to shine a light on the challenges faced by those with rare conditions in mainstream education.

Mario’s story touched the hearts of many in our community. At just 17, Mario turned the loss of his father to NF2 into an inspiring mission to honour his memory and raise awareness. With the support of his family, he cycled 500 km across the Pyrenees to raise funds for Nerve Tumours UK. Mario’s resilience, optimism, and drive embody the spirit of our community. His journey reminds us of the importance of coming together to support one another and create meaningful change.

Each of these stories highlights the resilience, courage, and connection that define our community. They inspire us to continue our work and strive for a brighter future for everyone affected by NF.

Looking to 2025

As we look to the year ahead, we are focused on continuing our expansion. We aim to further our work with NF nurses and increase the accessibility of specialized care across the UK. As always, the "Shine a Light" campaign will be a key initiative, helping to raise awareness and increase visibility for those living with NF. We also plan to update our “iNForm Your...” series, helping people to learn more about NF in workplaces, schools, universities and healthcare settings. While also pushing for an increase in medical understanding of NF and research.

I am also delighted to announce our new Dedication Wall on the website. This space allows you to post special dedications to those in the NF world—whether to celebrate the strength of someone living with NF, raise awareness, or thank a loved one or a nurse for their incredible care. It is a heartfelt way to honour and connect with the community we hold so dear.

We are committed to ensuring that every person with NF has access to the support they need and deserves. But we need your help to make it happen. Your continued involvement—whether through fundraising, sharing your story, or simply spreading the word—makes a significant difference.

A Message of Hope

Finally I will leave you with this, we are here, working every day to make things easier for the NF community. We are listening, and we are growing. Together, we will continue to fight for a world where those affected by NF are treated with dignity and respect.

We are inspired by the strength and courage shown by everyone in the NF community. As mentioned above, Liz who has found hope and empowerment in connecting with others and using her voice to make a difference, wrote a powerful poem which I have included below. I believe it captures the spirit of perseverance and community that unites us all.

Thank you for your ongoing support. We couldn’t do this without you, and we look forward to the future, with you by our side.

Warmest wishes for a joyful and peaceful Christmas and a New Year filled with hope and progress.

With Thanks,

Karen Cockburn,
Charity Director,
Nerve Tumours UK