Dear Friends and Members,
I hope this message finds you well.
I am excited to invite you to our National Zoom Webinar on Thursday, 18th July, log on from 7pm and starting at 7:30 pm to 8:30 pm.
We are thrilled to announce that our very own Joint Chair of the Medical Board, Mr. Sinan Barazi, will be leading the webinar on the topic:
“Am I suitable for a microvascular decompression?”
This session will provide comprehensive insights into the criteria, benefits, and potential risks associated with the procedure.
We are very grateful to Mr. Sinan Barazi for raising this crucial question. His input ensures we address important concerns and provide valuable information to our members. This promises to be an insightful session, and I am looking forward to hosting it.
If you have any questions, please do not hesitate to email [email protected] in advance.
Children and TN
Following my previous message earlier this week about Grace Miller, an inspiring young girl of 11 with TN, and her father Garry who shared her experiences, I am reminded of the power of community and support.
Grace’s remarkable efforts in fundraising for TN at her school have deeply moved many of you. Her story is a testament to the resilience and strength within our charity.
A huge thank you to all of you who sent messages and donated to Grace’s fundraising page for us at TNA. The messages and impact this has had are very moving, and from your responses, it is clear how much the story of a little girl suffering from TN has touched us all.
Loneliness Awareness Week: 10-16 June 2024
Loneliness Awareness Week, is crucial to shed light on the profound impact loneliness has, particularly for those suffering from chronic conditions like Trigeminal Neuralgia (TN).
Our pain not only affects physical health but also deeply impacts mental and social well-being, can leading to profound loneliness.
Pain and Isolation
For many, like myself, living with TN is like being in a constant battle with an invisible enemy. The pain is not just a physical symptom; it is a barrier to social occasions, conversations, and even expressing feelings to family members. “This can lead to a significant withdrawal from social life, trapping the sufferer in a cycle of pain and solitude.”
“Experiencing pain, silently screaming, is the most lonely thing. I often wish I was not here, but I know if I need to, I can pick up the phone or email and someone will care.” JH
“My family doesn’t want me to talk about my pain, which makes it even harder. Having the Friendship Line to call and talk about what I’m going through has been a lifesaver.” SP
The Role of TNA UK in Combating Loneliness
TNA UK, recognising the challenges of pain and loneliness, we offers a range of services aimed at reducing isolation.
The Friendship Line operates on a simple premise: regular, scheduled calls from trained volunteers to offer conversation, companionship, and emotional support. This service has become a lifeline for many, providing not just a distraction from pain but also a connection to a community that understands their experiences.
“I called the helpline regularly for support and someone to talk to. I was offered the chance to have a regular call with one of the great volunteers every week. I would get a call for about 45 minutes. It was something to look forward to. It has made me feel less lonely and sad,” one user shared, highlighting the profound impact of this initiative.
Libra Study Drug Trial
I am pleased to announce that the Libra Study, drug trial aimed at evaluating the efficacy and safety of Basimglurant for Trigeminal Neuralgia (TN), is still ongoing. This Phase II/III multicentre clinical trial, approved by the Medicines and Healthcare products Regulatory Agency (MHRA) and an ethics committee, represents a significant advancement in TN research.
For those who may have registered for the trial and have not yet received communication, we kindly ask you to contact us. Your participation is invaluable, and we want to ensure that everyone who has expressed interest in joining the study is kept informed and supported throughout the process.
The trial’s comprehensive design includes an initial 8-week run-in phase for dosage adjustment, followed by a 12-week double-blind phase, and concluding with a 52-week open-label extension phase. This meticulous approach ensures a thorough evaluation of Basimglurant’s potential benefits and safety for TN patients.
We are grateful to our volunteers for their commitment to advancing TN research. Your dedication plays a crucial role in moving us closer to uncovering new treatments and improving the lives of those living with TN.
Regional Support Meetings
These meetings provide a safe space for individuals to meet others who ‘get it,’ understand the challenges of living with TN, and can offer empathy and advice grounded in personal experience.
Attending these meetings has been transformative for many.
“Meeting people in the same boat, experiencing facial pain that they understand, has helped tremendously,”noted a participant.
TNA helpline, and e-helpline the Friendship Line, and regional support meetings, provide essential connections that foster a sense of community and understanding, crucial for combating loneliness and improving quality of life for those with TN.
By raising awareness during Loneliness Awareness Week, we can all contribute to reducing the isolation felt by those with chronic pain conditions.
I look forward to seeing you at the National Zoom Webinar.
Together, we can make a difference in combating loneliness.
As ever,
Aneeta
Aneeta Prem
CEO
