Dear Members and Friends,
I hope this message finds you well.
I’m pleased to share updates from two recent events that have reinforced the importance of our work and the strength of our community.
In Edinburgh, I had the opportunity to connect with our Scottish members and discuss the challenges of living with Trigeminal Neuralgia (TN). The chance to meet face-to-face was invaluable, providing a renewed sense of connection and support. A highlight of the visit was attending Kyle Ayers’ show, “Hard to Say,” at the Edinburgh Fringe Festival. Kyle, who has personally experienced TN, used his platform to raise awareness about the condition. His blend of humour and candid insight resonated deeply with our members. One attendee noted, “It was the first time I met anyone else with the condition, and I left feeling hopeful that I had support and wasn’t alone. Kyle’s show was very real and resonated with me on how I feel about TN.”
Additionally, I was able to contribute background information for The Telegraph, resulting in an article that brought much-needed attention to TN and our work at TNA UK. Media exposure like this is crucial in supporting our mission.
Read more on our News Page.
Norfolk and East Anglia
We held a successful meeting in Norwich, East Anglia, with members from the surrounding areas. Neurosurgeon Mr Mathew Guilfoyle from Cambridge University Hospitals delivered an insightful presentation on the latest treatments for TN. His expertise offered essential knowledge and reassurance to all who attended.
The engagement and participation from members at the Norwich meeting were truly encouraging. These regional support meetings are vital in addressing the isolation and loneliness that can often accompany TN. The opportunity to connect in person allows us to share experiences, learn from one another, and strengthen the bonds within our community.
I want to extend my sincere thanks to all the volunteers who helped make both the Edinburgh and East Anglia events a success. Your dedication is crucial to our continued efforts and the support we provide to our members.
These recent events have highlighted the resilience of our TNA UK community. Coming together to share knowledge and support one another is at the heart of what we do, and through these connections, we continue to make a meaningful impact.
Thank you all for your ongoing commitment and support. Together, we are making progress in raising awareness and improving the lives of those affected by TN.
Libra Study Drug Trial Update
The Libra Study, evaluating Basimglurant for Trigeminal Neuralgia (TN), continues to progress. This Phase II/III multicentre clinical trial, approved by the MHRA and an ethics committee, comprises:
• An 8-week run-in phase for dosage adjustment
• A 12-week double-blind phase
• A 52-week open-label extension phase
If you have registered for the trial and have not received communication, please contact us. Your participation is crucial for advancing TN research.
At TNA UK, we are committed to exploring various avenues that might bring relief to our members, from medical treatments to day-to-day management strategies. We hope these updates demonstrate our ongoing efforts to support you in managing life with TN.
Thank you for your continued support and involvement in our community.
Volunteer Opportunities with TNA
If you are interested in volunteering for TNA, we have several exciting opportunities available:
Regional Support Group Leads:
If you are a good organiser and enjoy meeting people with Trigeminal Neuralgia (TN), consider hosting your own regional support meetings. Bringing people together reduces isolation and provides a platform for understanding and support. This role is incredibly rewarding and can make a significant difference in the lives of those affected by TN. If you’re interested, please let us know.
Helpline Volunteers:
We are seeking dedicated individuals to join our Helpline team. This role involves providing support and information to those who reach out for help. You will receive comprehensive training, and the experience is highly rewarding, offering a vital lifeline to many people. Additionally, we need volunteers for our E-Helpline, which involves responding to emails from individuals seeking assistance.
Fundraising Volunteers:
We are also looking for individuals interested in various forms of fundraising. Whether it’s running a marathon, organising a ‘Tea for TNA’ event, or coming up with innovative local fundraising ideas, your efforts can greatly benefit the charity. Fundraising is essential to our work, enabling us to continue providing support and resources to those in need.
Please let us know if you are interested in any of these roles, and we will get back to you at our earliest convenience. Volunteering with TNA is a meaningful way to contribute to the community and make a positive impact.
