Dear Members and Friends,

I hope this message finds you well. Our recent webinar with Dr. Mark Weatherall on the history of trigeminal neuralgia has sparked engaging discussions and has been notably well-received. As Easter approaches, it provides an opportune moment for us to reflect on our progress and future aspirations.

Despite prevailing financial challenges within the charity sector affecting donations, our dedication to supporting those with TN and facial pain has not waned. Your continued support plays a crucial role in sustaining our services, which include:

Feedback highlights include appreciation for the clarity and support provided by our helpline, the invaluable connections made through our support meetings, the informative content of our webinars, and the impact of donated memberships on individuals’ journeys with TN.

A special thank you to our volunteers participating in the Neoma Libra trial, emphasizing its significance to our community.

This Easter, as we navigate the demand for donated memberships and economic constraints, your support remains essential.

Thank you for your commitment. Together, we continue to make a meaningful difference in the lives of those affected by trigeminal neuralgia and facial pain.

Wishing you a Happy Easter,

Aneeta Prem

Brain Awareness Week

Understanding Trigeminal Neuralgia: Brain Awareness Weeks Key Focus

As Brain Awareness Week unfolds, we spotlight a significant condition: Trigeminal Neuralgia (TN). This disorder underlines the complexity of our brain’s neural networks. TN goes beyond being a mere medical condition. It serves as a vivid reminder of our nervous system’s delicate equilibrium and the paramount importance of brain health.

Exploring the Brain and Trigeminal Neuralgia

The human brain is nothing short of remarkable. It governs both our basic survival instincts and our most intricate thoughts and emotions. Central to our interaction with the surrounding environment is our nervous system. This system is a sophisticated network of nerves, responsible for transmitting signals between the brain and various body parts.

One crucial nerve affected by TN is the trigeminal nerve. It splits into three branches: the ophthalmic (V1), maxillary (V2), and mandibular (V3). These branches are pivotal in conveying facial sensations to the brain. TN triggers severe, stabbing pains in the face, elicited by simple daily activities like eating, speaking, or feeling a gentle breeze. Many describe this pain as the most intense known to medical science.

Neurologists’ Vital Role

Neurologists stand at the forefront of TN treatment. They specialize in nervous system disorders. Diagnosing TN presents a challenge. Its symptoms are variable and can mimic other conditions. Neurologists use patient histories, thorough examinations, and MRI tests to pinpoint TN. They also distinguish it from other facial pain sources.

Treatment strategies often include medications such as anticonvulsants. These drugs aim to reduce nerve firing. For those unresponsive to medication, surgery might be an option. Neurologists play a key role in developing and overseeing these treatment plans. Their goal is to enhance the quality of life for their patients as much as possible.

A Glimpse into Our Nervous System’s Complexity

Our nervous system’s intricacy is astounding. Metaphorically, if we

Brain Awareness Week
Brain Awareness Week

lay the brain’s nerves end to end, they could stretch around 100,000 miles. This figure highlights the network’s vastness. In truth, our brain houses approximately 86 billion neurons. Each neuron can form thousands of connections with others. This extensive network is what neurologists and researchers navigate. Their aim? To comprehend conditions like TN and to advance patient care.

Joining Forces This Brain Awareness Week

This Brain Awareness Week, let’s acknowledge neurologists and the medical community’s critical roles. They tirelessly work to expand our understanding of TN. Highlighting TN not only raises awareness but also galvanizes support for those affected. Furthermore, it encourages the pursuit of innovative treatments.

This week reminds us of neurological health’s significance. It underscores the continuous need for research and innovation in this domain. Together, let’s support individuals grappling with TN and the dedicated professionals aiding their fight.

Trigeminal Neuralgia Research

Advancing Trigeminal Neuralgia Research:

At the core of the Trigeminal Neuralgia Association UK (TNA UK), our unwavering commitment to research and the development of new treatments for Trigeminal Neuralgia (TN) stands as a beacon of hope. It’s with this dedication that we embrace groundbreaking initiatives like the Libra Study, a symbol of our resolve to deepen our understanding of TN and to offer real hope to those affected by this debilitating condition.

The Libra Study represents a significant leap forward in TN research. Endorsed by the Medicines and Healthcare Products Regulatory Agency (MHRA) and an ethics committee, this Phase II/III multicentre clinical trial is set to evaluate the efficacy and safety of Basimglurant. By targeting the mGlu5 receptors, Basimglurant promises a new path for reducing the neural overactivity and pain associated with TN, especially for those who have found little solace in existing treatments.

In recognition of the critical role of informed support, TNA UK recently hosted a comprehensive training session in London for our helpline volunteers and regional support leaders. This session, significantly enhanced by the participation of Dr Giorgio Lambru and his team, provided a deep dive into the details of the Libra Study. Dr Lambru, a leading figure in the field and Joint Chair of our Medical Advisory BoardMHRA) and an ethics committee aneeta prem ceo TNA ibre study offered invaluable insights into the trial, equipping our team with the knowledge needed to assist our members effectively. This training underscores our belief in the power of informed advocacy and support, preparing us to navigate the complexities of TN treatment options with our community.

The Libra Study’s design is a testament to the meticulous approach taken towards evaluating Basimglurant’s potential. It encompasses an initial 8-week run-in phase for dosage adjustment, a subsequent 12-week double-blind phase, and a final 52-week open-label extension phase. This comprehensive structure is aimed at rigorously assessing the treatment’s benefits and safety.

Our criteria for study participation are carefully considered, welcoming adults aged 18 to 75 diagnosed with primary or idiopathic TN. This approach is a reflection of our commitment to reaching those in urgent need of new treatment avenues. The study’s international footprint, spanning across continents, not only showcases its potential global impact but also exemplifies TNA UK’s commitment to fostering international research collaboration.

Participant support is a cornerstone of the Libra Study, with all related travel and medical expenses covered to ensure accessibility. This aligns with TNA UK’s ethos, where the well-being and support of our members are paramount.

The enthusiasm and gratitude from our community have been profound, with members appreciating the opportunity to partake in such critical research. One member eloquently shared their feelings: “A big thank you to our lovely TN association for telling me about the trial. I feel like I am able to do something for all my fellow sufferers. I am going into the trial full of optimism and hope.” These words beautifully capture the essence of our mission and the vital role of research in offering hope and enhancing the lives of those with TN.

As we forge ahead in supporting pivotal research projects like the Libra Study, the support of our members and the wider community remains invaluable. Through our collective efforts, we are poised to make significant advancements in the treatment of TN, improving the quality of life for those affected by this condition.

Together, we are not merely observers of the evolution of TN treatment; we are active contributors to a future where the challenges of Trigeminal Neuralgia can be overcome, and hope is a tangible reality for every person facing this condition.