Research Libre Study

I am privileged to share with you the strides we are making in supporting groundbreaking research into Trigeminal Neuralgia (TN). Our commitment to advancing the understanding and treatment of TN is unwavering, and the Libra Study stands as a testament to this dedication.

The Libra Study, a Phase II/III multicentre clinical trial approved by the Medicines and Healthcare Products Regulatory Agency (MHRA) and an ethics committee, is at the forefront of exploring the efficacy and safety of Basimglurant. This innovative medication, targeting the mGlu5 receptors, offers new hope in mitigating the neural overactivity and pain associated with TN, especially for those who have found little relief with existing treatments.

Understanding the importance of well-informed support and advocacy, we took the initiative to organise a comprehensive training session in London for all our helpline volunteers and regional support leaders. This training was meticulously designed to arm our team with the necessary knowledge to field questions about the trial and to assess its potential benefits for our members. Such informed dialogue is crucial in navigating the complexities of TN treatment options.

The trial itself is structured to rigorously assess Basimglurant’s potential, comprising an initial 8-week run-in phase for dosage adjustment, followed by a 12-week double-blind phase, and culminating in a 52-week open-label extension phase. This meticulous approach ensures a thorough evaluation of the treatment’s efficacy and safety.

Eligibility for the study is thoughtfully considered, extending to adults between 18 to 75 years diagnosed with primary or idiopathic TN. It underscores our aim to reach those most in need of new treatment avenues. The study’s reach, spanning across multiple countries, not only reflects its global impact but also TNA UK’s commitment to fostering international collaboration in TN research.

Moreover, the Libra Study emphasises patient support by covering all related travel and medical expenses, ensuring that participation is accessible to all eligible individuals. This approach is reflective of our broader ethos at TNA UK, where the well-being of our members is paramount.

The feedback from our community has been profoundly positive, with members expressing gratitude for the opportunity to participate in such pivotal research. One member’s words resonate deeply: “A big thank you to our lovely TN association for telling me about the trial. I feel like I can do something for all my fellow sufferers. I am going into the trial full of optimism and hope.” This sentiment captures why we champion such research: to offer hope and make a tangible difference in the lives of those affected by TN.

In closing, the support of our members and the wider community is invaluable as we continue to back significant research endeavours like the Libra Study. It is through these collective efforts that we move closer to uncovering new treatments and ultimately improving the quality of life for those living with Trigeminal Neuralgia.

 

Happy New Year

Happy New Year from all of us at TNA UK! As we step into 2024, we’re proud to announce several new initiatives aimed at enhancing our community support and engagement. With our recent rebranding, we’ve adopted a fresh, contemporary approach. This update is complemented by our new range of merchandise, which includes elegant lanyards, practical medical alert cards, and unique badges. These items are more than just functional; they represent our shared commitment and the progress we’re making together.

This year, we’re also focusing on providing essential support through our helpline and friendship line. These services are available for anyone experiencing loneliness or in need of assistance, reflecting our commitment to being a supportive community presence.

In addition, we’re excited to resume our face-to-face regional support meetings. These gatherings are crucial for creating personal connections, fostering discussions, and building a network of mutual support. Your participation in these meetings is invaluable, as they offer a great opportunity for engagement and community building.

Our helpline remains a key resource for those seeking support. Staffed by trained professionals, the helpline offers advice, support, or a friendly conversation to those who reach out.

As the year progresses, we look forward to your active participation in our initiatives, whether it’s through engaging with our services or attending our events. Your involvement is essential to our continued success and growth.

Here’s to a year of positive impact and strengthened community connections.

National Trigeminal Neuralgia Awareness Day

 

National Trigeminal Neuralgia Awareness Day

“#ShowTN3Fingers”: A Revolutionary Initiative for National Trigeminal Neuralgia (TN) Awareness Day by Aneeta Prem MBE

 


 Introduction by Aneeta Prem MBE

“I’m thrilled to introduce you to our innovative initiative, ‘#ShowTN3Fingers,’ conceived to commemorate National TN Awareness Day on 7th October and to intensify awareness of trigeminal neuralgia.”


Why ‘#ShowTN3Fingers’ is Imperative for National TN Awareness Day

As we mark National TN Awareness Day on 7th October, it is imperative that we unify our voices and gestures to shed light on this debilitating condition. This campaign offers a channel to do just that.

Show TN 3 Fingers Poster Aneeta Prem


The Scientific Insight: ‘#ShowTN3Fingers’aneeta prem show tn3 fingers

This campaign is far more than symbolism; it’s an educational pillar:

ShowTN3Fingers
ShowTN3Fingers Kirsten Cooper

A Special Invitation to Medical Professionals

Your participation is pivotal:


The Impact: A Testimony

“One TN sufferer shared, ‘This campaign lets me non-verbally communicate my pain to my family and healthcare provider.'”

ShowTN3Fingers
ShowTN3Fingers Lorraine Woolley MBE

Addressing the Emotional Reality: Trigeminal Neuralgia

Often dubbed the ‘suicide disease,’ the emotional burden of TN can be severe. Our helpline and regional support groups offer a lifeline.


How to Engage and Make a Difference

National Trigeminal Neuralgia Awareness Day

  1. Capture: Snap a selfie or video.
  2. Narrate: Include your personal reason.
  3. Share and Hashtag: Use #ShowTN3Fingers. #faceofTN

    Rachael '#Showingtn3fingers"l National Trigeminal Neuralgia Awareness Day
    Rachael ‘#Showingtn3fingers”l National Trigeminal Neuralgia Awareness Day
  4. Donate: Contributions fuel our helpline and educational outreach.
Showtn3fingers
Showtn3fingers Deborah Edwards

A Worldwide Call to Act

We invite everyone, regardless of geographic location, to be part of this initiative and thereby enrich the narrative surrounding trigeminal neuralgia. and join the National Trigeminal Neuralgia Awareness Day

Trigeminal Neuralgia Conference

Trigeminal Neuralgia Conference

Empowering TN Sufferers with Practical Solutions for Pain Management

 

Trigeminal Neuralgia Conference in January 2023 was a life-changing event for Trigeminal Neuralgia (TN) and facial pain sufferers. This conference brought together renowned experts in the field of TN. Providing invaluable insights into the latest developments in treatment and management. If you suffer from TN, the information presented at this conference is not to be missed.

In this article, we’ll delve deeper into the conference and highlight the practical solutions for TN pain management. The empowering experience for attendees, and the commitment of TNA to expand its focus to include facial pain.

Expert Speakers Provide Practical Solutions for TN Pain Management

The conference was expertly chaired by Aneeta Prem MBE and the joint chairs of the medical advisory board, Dr Lambru and Mr Barazi. The event was well-organized, and delegates were treated to an inspiring and informative day of presentations. The quality of the speakers was impressive, and they provided practical solutions for TN pain management.

“Giorgio Lambru Is simply the best thank you for expanding TNA-UK to include facial pain!’

“Mr Sinan Barazi Consultant Neurosurgeon a fantastic compassionate surgeon and a great speaker “

Dr Lambru and Mr. Barazi, renowned experts in the field of TN, offered invaluable insights into managing TN pain. Linda Fisher, a Chartered Psychologist, provided practical tips on how to cope with the emotional impact of TN, while Mark Weatherall, a Consultant Neurologist, gave an informative presentation on the neurological treatment of TN.

The conference provided practical solutions for TN pain management, leaving attendees feeling better equipped to manage their TN pain. As one delegate put it, “The information presented at the TNA conference has changed my life. I feel better equipped to manage my TN pain, and I’m grateful for the support I received from other attendees.”

An Empowering Experience for TN Sufferers

The TNA conference was an empowering experience for TN sufferers. Attendees learned from leading experts in the field.  Delegates felt inspired to take control of their pain. As another delegate said, “The TNA conference was an empowering experience. The knowledge and expertise displayed by the speakers were impressive. I left feeling more informed and better equipped to manage my TN pain.”

TNA Expands Its Focus to Include Facial Pain

In addition to the wonderful insights provided by the TNA conference attendees were thrilled to hear that the Trigeminal Neuralgia Association (TNA) has expanded its focus to include facial pain as part of its work. This decision was met with great enthusiasm, as it recognizes the wide range of pain experiences that individuals with facial pain endure.

Furthermore, four individuals who suffer from TN and facial pain were delighted that research is at the heart of what TNA wants to do. They recognized that research is essential for discovering new treatments and ultimately finding a cure for TN and facial pain. This focus on research shows that TNA is dedicated to providing the most up-to-date and effective treatment options for its members.

TNA Continues to Support Members

Attendees were also pleased to learn that TNA will continue to support its members with its helpline and regional meetings. The TNA helpline is a vital resource for those who need support and advice.

The regional meetings provide an opportunity for members to meet others who are going through similar experiences, share stories, and exchange practical tips on how to manage their pain.

Conclusion

In summary, the TNA conference was a great success, and attendees left feeling empowered, informed, and supported. The decision to include facial pain as part of TNA’s work, the focus on research the continued support through the helpline and regional meetings show that TNA is committed to improving the lives of individuals with TN and facial pain.

feedback

 

Life-Changing Experience

JH “found the TNA conference to be a life-changing experience. They were impressed by the organization and the quality of the speakers. Who provided insightful information on managing TN pain. Specifically mentioned Aneeta Prem, CEO, as a standout speaker who inspired them with her knowledge and passion for helping those with TN.

Invaluable Insights from Dr Lambru and Mr Barazi

DS was grateful for the opportunity to learn from experts in the field such as Dr Lambru and Mr Barazi. They are both ‘Simply the Best”

They found their presentations to be well-structured and informative, providing them with invaluable insights into managing their TN pain.

Inspiring Presentations by David Martin, CEO of MS Trust

DS was inspired by David Martin’s presentation on the role of advocacy in improving the lives of those with TN. As CEO of MS Trust and Chair of the Neurological Alliance, Martin offered a unique perspective on the challenges faced by TN sufferers and how they can be overcome through advocacy and support.

Linda Fisher’s Insights into Psychosocial Support

SP found Linda Fisher’s presentation on psychosocial support for TN sufferers to be particularly insightful. As a Chartered Psychologist, Fisher offered practical tips on how to cope with the emotional impact of TN, as well as the importance of seeking support from friends, family, and professionals.

Uke Cascarini’s Expertise in Maxillo-Facial Surgery.

TL was impressed by the expertise of Uke Cascarini, a Consultant Maxillo-Facial Surgeon. Cascarini provided detailed information on surgical options for TN, including the latest advancements in the field. The delegate found the presentation to be informative and helpful in understanding their treatment options.

Mark Weatherall’s Insights into Neurological Treatment

LZ stated appreciated Mark Weatherall’s insights into the neurological treatment of TN. As a Consultant Neurologist, Weatherall provided a comprehensive overview of the various treatments available, including both surgical and non-surgical options. LZ found the presentation to be both educational and inspiring.

Trigeminal Neuralgia Conference

Feedback

“Compassionate Support from TNA Speakers” “I was touched by the compassionate support they received from the TNA speakers. They appreciated the empathy and understanding displayed by the experts in the field and felt that their struggles with TN were being taken seriously.”

“Insightful Discussions on Coping Strategies”: “appreciated the insightful discussions on coping strategies for TN sufferers. They found the presentations on psychosocial support and mindfulness to be particularly helpful in managing their pain and improving their quality of life.”

 

“Inspiring Stories from Other TN Sufferers” ‘I was inspired by the stories shared by other TN sufferers at the TNA conference. They appreciated the opportunity to connect with others who understand the challenges they face, and felt a sense of community and support as a result”.

“Outstanding Organization and Planning”: was impressed by the outstanding organization and planning of the TNA conference. They appreciated the seamless flow of the event and the attention to detail and felt that their experience was greatly enhanced as a result.”