Dear Members and Friends
I hope this message finds you well.
Last month, we conducted a training day for our helpline volunteers and Regional Support Leaders, focusing on enhancing our understanding of trigeminal neuralgia and facial pain. This session, in collaboration with Neomi Libra, a pharmaceutical company at the forefront of a promising trial, enabled our volunteers to engage with probing and thoughtful questions
I am pleased to report that the training day was highly regarded for its informative content and engaging format. A significant highlight was the participation of our Chairs of the Medical Board, Dr Giorgio Lambru and Mr Sinan Barazi. Their expertise and insights added considerable depth to our discussions on the condition and its treatment options.
We also welcomed Emma Masterson as our new Regional Support Leader in Kent. Her first session underscored the value of shared experiences, offering a space for individuals to discuss their journeys with trigeminal neuralgia and facial pain, highlighting the critical role of our regional support groups. It was a privilege attending the meeting and hearing members emotional and brave battles with TN and facial pain.
Recognising the challenges of in-person meetings for many, we continue to facilitate virtual meetings via Zoom, ensuring everyone has access to the support and connection they need.
We are mindful of the economic climate’s impact on our donations but remain committed to providing steadfast support to those affected by trigeminal neuralgia and facial pain.
In light of our ongoing commitment and the increasing demand for our services, we are reaching out to our community for support through donations or fundraising initiatives. Your generosity will enable us to continue our vital work and expand our reach to those in need. Any contribution, big or small, makes a significant difference in our ability to offer support, education, and advocacy. Together, we can ensure that our community remains strong and resilient.
Please utilise our helpline and attend regional meetings, whether in-person or online. Your participation is crucial to the strength and vitality of our community. Our Friendship Line continues to offer the opportunity for regular conversations with our volunteers, who are happy to be a listening ear to support those with trigeminal neuralgia (TN) or facial pain. This service is a testament to the strength and solidarity of our community, ensuring that no one feels isolated in their journey. To join the friendship line please email [email protected]
Remember, you are not alone. Our community is here to support you every step of the way.
Warm regards,
Aneet
A Research Study for Trigeminal Neuralgia
Do You Have Trigeminal neuralgia ?
Is your current treatment sub-optimal ?
If you answered yes to both, the Libra Study may be an option for you.
The Trigeminal Neuralgia Association UK (TNA UK) recently showcased the Libra Study at an event in London, featuring a detailed presentation by Dr Giorgio Lambru and the Libra team. Dr Lambru, who serves as the Joint Chair of the Medical Advisory Board, offered valuable insights into this study focused on Trigeminal Neuralgia (TN), specifically for patients whose current treatments have been inadequate.
For information and registration assistance, Heather Morris at TNA UK can be contacted via [email protected].
The Libra Study, cleared by the Medicines and Healthcare products Regulatory Agency (MHRA) and an ethics committee, is a Phase II/III multicentre clinical trial. It aims to evaluate the efficacy and safety of Basimglurant in daily doses of 1.5 to 3.5 mg for TN patients. This comprehensive trial includes an 8-week run-in phase, followed by a 12-week double-blind phase, and a 52-week open-label extension.
Candidates for the study are adults aged 18 to 75 diagnosed with primary or idiopathic TN, who have not found relief with existing therapies. Exclusions include individuals with secondary TN, uncontrolled medical conditions, or recent cardiovascular disease. Eligibility is determined by a study doctor.
Basimglurant targets mGlu5 receptors and is hypothesised to mitigate TN-related neural overactivity and associated pain. Its analgesic efficacy has been supported in preclinical models, showing dose-dependent responses in neuropathic pain.
The study commences with a screening phase to gather medical history, check on patients health and informed consent. This is followed by the run-in phase, where Basimglurant dosage is carefully adjusted. In the double-blind phase, participants are randomly assigned either Basimglurant or a placebo, with blinding in place for both the participant and the study doctor. Participants who complete this phase may enter the open-label extension of 1 year.
An electronic pain diary via a study app is a required part of the participant’s commitment throughout the trial.
The Libra Study’s international reach includes sites in the UK, the US, Denmark, Germany, Italy, Poland, Spain, and Turkey, reflecting its global scope.
While TNA UK supports the pursuit of research and clinical trials in advancing TN treatments, we maintain a neutral stance on individual studies. It is crucial for participants to inform their GP of their participation. The study covers all related travel and medical expenses for participants and an accompanying person.
For further details or to express interest in the Libra Study, Your active engagement is crucial in furthering the development of effective treatments for Trigeminal Neuralgia.