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Australian Organisations Raising Awareness about Trigeminal Neuralgia

Our organisation has been a registered Charity since 2003 and next year will be our 20th Anniversary.  We work tirelessly to ensure all sufferers receive support and our new website has certainly raised our profile in the digital space

In 2018 another organisation was established in Victoria founded by Skye and Peta called FightingTN

These two ladies have created an amazing community where local business support their fund raising by offering a % of profits.

All funds raised by FightingTN are directed to the brain org who utilise the funds for research.

You can buy product on their website, see upcoming events, create and register your own fundraising event too.

https://www.fightingtn.com.au/host-a-fundraiser

Every year FightingTN hosts an awareness day event for Light up in Teal

https://www.fightingtn.com.au/2022ftnevent

We are all working for the same outcome  – a cure for Trigeminal Neuralgia.

 

 

 

 

 

 

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Trigeminal Neuralgia Research – The Facial pain Research Foundation

YouTube Trigeminal Neuralgia: The Facial Pain Research Foundation – Kim Birchiel MD

Research is happening around the world to better understand Trigeminal Neuralgia and this foundation has nine research programs ongoing

The Facial Pain Research Foundation – it’s time to find a cure! (facingfacialpain.org)

In Search of a Cure: Finding the Genes that Predispose to Trigeminal Neuralgia

A compressed trigeminal nerve is sometimes the reason why a patient suffers. However, it’s a fact that many people, if imaged, would present a similar compression, but experience no pain. Why? That question inspired our scientists to hypothesize there is a genetic predisposition to TN. Their plan is to find these defective genes in TN sufferers, which could then provide targets for designing customized drugs or gene therapy. For their analysis, they collected DNA samples from nearly 1,000 patients at seven US locations, one in Canada, and one in the UK. Their findings from this analysis may unlock the mystery of why some people suffer, and so many others do not.

Investigators:
Scott Diehl, Ph.D.
Kim Burchiel, M.D.
Ze’ev Seltzer, BMS, DMD

Towards Gene Therapy for Trigeminal Neuralgia

The primary goal of this project, led by Dr. Todd Golde at the University of Florida, is to identify a novel gene therapy approach to treat and cure TN and related neuropathic pain. Gene therapies rely on a modified viral vector to enable delivery of the genetic “payload” to cells. In this case, the viral vector is, in essence, the “shuttle” that enables the payload to be delivered to the nerve. There are many potential genetic “payloads” that might be used to dampen or block pain signaling in the nerve. Our team’s research involves systematically evaluating various viral vector shuttles, and various delivery methods. In addition, they will generate payloads that suppress pain signaling by either knocking out (CRISPR mediated gene silencing), or reducing the level (miRNA based antisense approaches) of factors important in pain signaling.

Investigators:
Todd Golde, M.D., Ph.D.
Robert Caudle, Ph.D.
Yona Levites, Ph.D.
John Neubert, DDS, Ph.D.

Identifying Sensory Genes That Are Critical to Neuropathic Pain, Including Trigeminal Neuralgia

We believe we still don’t know all of the elements responsible for the initiation of Trigeminal Neuralgia pain. The question is which genes are critical and can these be selectively regulated to manage TN, but, to date, the focus of the field has been on a relatively small number of genes.  Dr. Allan Basbaum is examining a relatively large number, and wider variety of, genes using the “one gene at a time” approach. This study was prompted to a great extent by his team’s comprehensive analysis of a dorsal root ganglion (DRG) from intact and nerve-injured mice. This analysis identified almost 1200 genes that affected pain after the injury. To prioritize genes for future study as causing TN, they chose some that have been reported repeatedly in the scientific literature, genes that showed the greatest change in expression after injury, and the so-called dark genes which until recently have largely been ignored. The plan is to identify the genes that impact TN, and then create or find the therapies needed to “manage or fix” them to end the pain.

Investigator
Dr. Allan Basbaum, Ph.D.

Mapping Towards a Cure: Finding the Brain Signature Centers that Cause Trigeminal Neuralgia

Led by Dr. John Neubert at the University of Florida, our team of researchers hypothesized that specific neural centers in the brain and spinal cord are active prior to, and during, a TN attack, essentially “lighting up” with activity. These neural centers hold the key to providing pain relief, as they give us a specific area to target for curative treatments- if we can block these centers, we can prevent the pain. Using highly advanced magnetic resonance imaging, our team has scanned over 60 TN patients, and located what we believe are the “pain centers” of TN patients.

Investigators:
John Neubert, DDS, Ph.D.
Marcello Febo, Ph.D.
Mingzhou Ding, Ph.D.
Robert Caudle, Ph.D.

Evaluation of a Cellular Therapeutic for the Treatment of Trigeminal Pain

Neurona Therapeutics is a pre-clinical stage biotechnology company that was founded by four leading-edge neuroscientists and stem cell pioneers at The University of California, San Francisco. Led by Dr. Cory Nicholas, Ph.D., Neurona has formed a strategic research collaboration with the Facial Pain Research Foundation, to develop a human inhibitory interneuron therapeutic (neuro-stem cells) for the treatment of neuropathic pain conditions like TN.  As an example of the unique collaboration we foster between our scientists, our researchers at The University of Florida are providing the animal subjects to test whether Neurona’s neural stem-cells can stop neuropathic facial pain in animals. If successful, we will then move to human trials.

Investigators:
Dr. Cory Nicholas, Ph.D.
Dr. John Neubert, Ph.D.
Dr. Allan Basbaum, Ph.D. 

Determining Efficacy of CODA ‘Switch’ Receptors in a Model of Neuropathic Pain

CODA Biotherapeutics, Inc., is a preclinical-stage biopharmaceutical company developing a gene therapy to stop TN. Led by Dr. Orion Keifer, CODA has formed a strategic research collaboration with the Facial Pain Research Foundation, with the goal of utilizing CODA’s chemogenetic gene therapy platform to identify and develop potential new therapies and cures for Trigeminal Neuralgia, and related neuropathic pain. Under the collaboration, CODA is working with the FPRF to establish a research continuum that is dedicated to identifying the mechanisms underlying neuropathic facial pain and to developing groundbreaking therapeutic strategies that aim to permanently stop the pain.

Investigators:
Orion P. Keifer, Jr., M.D., Ph.D.

Cholesterol Homeostasis in Peripheral Nerve Myelin with a Focus on Statins

The aim of this research, led by Dr. Lucia Notterpek, Ph.D., was to prove that unhealthy and/or damaged myelin- the protective coating of nerves- is the reason why some patients have TN pain. We have confirmed this in animal subjects, and treatments to stop their pain by repairing this damaged myelin have been successful. We hope to achieve this in humans organically, through dietary supplements, rather than with medications, and believe this will be an effective therapy for those who’ve developed TN as a result of myelin-related causes.

Investigators:
Dr. Lucia Notterpek, Ph.D.
Dr. Susan Percival, Ph.D.
Dr. Wendy Dahl, Ph.D.

Exploring Neuropeptide Guided Botulinum Light Chain for Use in Blocking Pain Transmission

The overall long-term goal of this project is to begin a search for new, novel, pain control therapies to supplant highly addictive opioids.  Dr. Rob Caudle at the University of Florida has chosen botulinum toxins as his therapeutic agent, which have already proven very successful in treating migraine headaches.  However, he has modified these toxins with a unique research approach. The newly created substances are directed to the appropriate sensory neurons, which Dr. Caudle and his team have identified, where they are internalized, and disrupt neurotransmission- the result of which, is the inhibition of pain.

Investigators:
Robert Caudle, Ph.D.

The Role of TMD in the Diagnosis of Trigeminal Neuralgia

There is considerable confusion regarding the diagnosis of TMD (Temporomandibular Disorder), and because of the lack of good diagnostic tools, many TMD patients end up being referred to neurologists and neurosurgeons as TN patients. Since there is significant symptom overlap between the two conditions, some of these TMD patients end up being mistakenly treated for TN.

The study will quantify how often TMD patients are mistakenly referred as TN patients. It will determine how many patients fit the diagnostic tools for both TN and TDM, and will define new diagnostic tools that will correctly predict a TMD patient. The result being a new protocol to screen oral facial pain patients for TMD suspects. The benefit of this work will be that TMD patients will be less likely to be treated for TN, and TN patients less likely to be treated for TMD because of an overlap in symptoms and the lack of good diagnostic tools.

Investigator
Kim Burchiel, M.D