Letter by Lorraine Burgess, Trigeminal Neuralgia Sufferer:
Every day I see new people joining support groups and coming to support and information pages. Many of you tell us how happy you are to find someone who understands what you are going through and that you are no longer alone. Some of you don't know yet about all the dedicated people around the world who are working hard to make sure that, fellow TNers, the newly diagnosed, and everyone who suffers from facial pain are not alone in thier struggle.
There are people who:
Create support groups like this so you can have a safe and private place to share your stories and learn from each other.
Create public support pages where the latest information is shared with everyone.
Create Organizations and Foundations to educate, raise awareness and raise funds for research to find a cure for everyone who suffers From TN and Facial Pain. Petitions sent to the World Health Organization to have TN and Facial pain added to their list of diseases, promoting better understanding and more funding for research.
They post to Newspapers, TV programs, send emails to Governments, Health Professionals and anyone or anywhere else they can, to raise awareness with the public about TN and Facial pain.
Fellow TNers who write blogs, do interviews with newspapers, television programs, on you tube and other social media. By telling their personal stories, these courageous, but normally very private people, have shown the world what it is like to live with this horrific, painful, debilitating disease.
You are no longer alone. Many of these people are like yourselves, living with the pain every day or watching their loved ones suffer from the pain. Even If they are pain free now, they still share the same fear that the pain will return.
What everyone wants and needs is a cure. The truth is that even with all this hard work, educating the public and each other, it will not happen unless this can translate into funding for research. There are clinical trials for new and better drugs, research into new ways to see inside the brain and new surgery's. All this is good, but it is not research to find a cure.
The only organization, that we know about, who is doing research to find a cure is the Facial Pain Research Foundation. Finding a cure for trigeminal neuralgia, the most painful disorder known to humans, is the mission of The Facial Pain Research Foundation. Its founders aim to reach the goal within the decade of 2011-2020, while also
developing therapies to permanently stop other nerve-generated facial pains and diseases.
This is where my donations will go, not only for my family but for everyone who suffers from TN and Facial Pain. Finding a cure will restore pain-free life not just in this
generation but for future generations, to millions of men, women and children around the world. Earlier this week I posted about a Christmas Fundraiser, where my family and I
decided to donate the money that we would normally spend on gifts, for the adults in our family, to the Foundation. I don't expect everyone to do this but I would like you to
consider donating a small portion (every little bit helps) of your gift giving budget, in your family's name or make it a gift to yourself. Christmas is a time when we all exchange gifts and what better gift can you give yourself, or others, than The Gift of Hope.
This is a blog by End Trigeminal Neuralgia. It is an interview with Michael Pasternak, one of the Facial Pain Research Foundation's founding trustees. If you decide to donate this will tell you where and how your money is used.
We hope that his answers can possibly give hope to people living with facial pain and their families.
Thank you to everyone who works to make sure TN and Facial Pain Sufferers are not alone and thank you to everyone who takes the time to reads this and to everyone who gives the Gift of Hope.
Thanks everyone for your Christmas Gift of Hope!
Toni Saunders...aka... TNNME