September 2012 Newsletter

Important announcements! New meeting date and location! Is this email not displaying correctly? View it in your browser. Trigeminal Neuralgia Support Group September 2012 NEW MEETING LOCATION! NEW MEETING DATE! Forward To A Friend Change Is Good We've made some changes this month! First, we've changed the meeting date to September 18th. Second, we've changed the meeting location to Panera Bread in Bearden. Grab a coffee or even enjoy dinner while we meet. This month's meeting will be a meet and greet followed by a roundtable discussion.  See the block below for specific information about the meeting.    We Need You! As you know we've been struggling over the last few years trying to figure out how to keep the Trigeminal Neuralgia Support Group going AND growing. We're at a point where we really need the group's help to keep things going. We need speakers and discussion topic ideas for our meetings. We need your suggestions for ways to engage the membership. We also need your help spreading the word so TN sufferers who don't already know about us can find us and join our meetings. If you are unable to attend meetings, we really want to hear from you to find out ways we can connect with you.  So, Now What? Let's hear your ideas for the future of the TN Support Group. We'll decide what will happen next based on your feedback and suggestions. It just seems that we've lost some steam over the past few years and although meeting attendance and feedback has fallen off, we're afraid to call it quits because we have helped a number of new members find a place to get support. So, it's up to you, the members to decide where we go from here. Note: This very same plea went out to members in the last newsletter and we received less than a handful of responses. This is your Support Group. Let us know how Jan and I can help make it the best it can be. As always, we are looking for volunteers to help us with the group. Let us know if you are interested. Please contact Lisa Mueller at ETNTrigeminalNeuralgiaSupportGrp@comcast.net | 865-406-3870 or Jan Bailey at MtnJan311@aol.com | 865-765-0437 with your suggestions or if you would like to volunteer. We'd love to hear from you! In Health, Lisa Mueller and Jan Bailey Visit the East Tennessee Trigeminal Neuralgia Support Group blog! Resources Visit these great on-line resources dedicated to helping TN sufferers and their loved ones Ben's Friends Facebook Page - BensFriends.org has a mission to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them. Founded by Ben Munoz after a 2006 stroke at age 29, BensFriends.org has a network of patient-to-patient communities and helps thousands of people around the world. For moreinformation, visit BensFriends.org (http://www.bensfriends.org/) Living with TN Facebook Group - Our mission is to provide a safe place for anyone affected by Trigeminal Neuralgia to connect with others. Visit http://www.livingwithtn.org/ to join the community. This is the extension of the community http://www.livingwithtn.org/, powered by http://www.BensFriends.org/.  Facial Pain Association - The Facial Pain Association (formerly The Trigeminal Neuralgia Association (TNA)) is a 501(c)(3) non-profit voluntary health organization, serving patients worldwide who suffer from neuropathic face pain, including TN, their families, and the physicians, dentists and healthcare providers who treat them. You will find many great resources here! Trigeminal Neuralgia Support Facebook Group - This group is for anyone who has suffered from this disorder and the people who love them. Lots of discussion and sharing in this group. With Great Mercy - Kathy Gilbert Taylor, Certified Rehabilitation Counselor, advocates for individuals with disabilities, especially those with facial pain. She was formerly the director of patient services for the Trigeminal Neuralgia Association (now the Facial Pain Association) in Gainesville, Florida. She has experienced the pain of several cranial neuralgias, giving her compassion for others who suffer. Kathy has been a personal source of comfort for me and provides some good resources. Comfort and Encourage - Judi S. Coleman started comfortandencourage.com with a desire to help others gain from her personal journey with Trigeminal Neuralgia. She has lots of resources and products to help sufferers as well. Some of these organizations are also on Facebook and Twitter. Find the best way for you to connect! About Us The East Tennessee Support Group for Trigeminal Neuralgia operates with the support of the Trigeminal Neuralgia Association (TNA). TNA is a 501(c)(3) non-profit voluntary health organization, serving patients worldwide who suffer from neuropathic face pain, including TN, their families, and the physicians, dentists and healthcare providers who treat them. TNA receives no Federal or State monies. TNA’s primary sources of funding are contributions, membership fees and revenue from the sale of books about TN and face pain available to everyone at www.endthepain.org or by calling 800-923-3608. The East Tennessee Support Group for Trigeminal Neuralgia meets to give members the opportunity to discuss their experiences with TN or listen to a healthcare professional with experience in treating TN patients. A newsletter full of TN-related information is sent to members prior to the meeting. Next Meeting Our next meeting will be on Tuesday, September 18th at 6:30pm. We'll be meeting at the Panera Bread on 4855 Kingston Pike in Knoxville. We will meet at a table in the rear of the space on the right side of the restaurant. First Meeting of 2013 Our first meeting of 2013 will be in March. We'll be sending out a newsletter in February with the details.

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Just the Stats: Communities: 27 Friends: 12,500+ In this issue: We're writing a book CMT Awareness Month Sweepstakes Continue Monthly Feature We're writing a book: ... and we need your help. We are writing an electronic book by, for, and about people with rare diseases with a focus on support. We hope this e-book with tell the rich, inspiring, moving stories of our members, and provide tips for 1,000s of people around the world affected by rare diseases. You can help by clicking on the tab called "Share your Story/Tips" at the top of your community page and following the instructions. Thanks for your help. CMT Awareness Month: September was CMT (Charcot Marie Tooth) Awareness Month. It was a month dedicated to spreading awareness and knowledge about CMT, the most commonly inherited peripheral neuropathy. Our CMT community reached people in 80 different countries with their awareness efforts. We are very proud :) Sweepstakes Continue: Congratulations to Susan K. from the AVMsurvivors.org community, our first winner in the Facebook sweepstakes contest. She won a premium stationery package from our friends at Sugar Paper. It's not too late to enter. All you have to do is LIKE us on Facebook. The more likes we have the easier we are to find and the more people we can help. Thanks everyone who has already helped spread the word. Monthly Feature: Jackie was diagnosed with Trigeminal Neralgia (TN) in 2006. She has gone through several treatments over the year but has still managed to maintain a great attitude. She has been a great help and support in the livingwithtn.org community in the last few months so we'd like to say thank you. You can stop by and say hi to her too. Become a Moderator for one of our communities by emailing us at info@bensfriends.org Share your inspirational story with us at stories@bensfriends.org.   Regards, Ben’s Friends Team

CONNECT WITH US on Facebook on Twitter on YouTube Our Communities Acute Disseminated Encephalomyelitis (ADEM) ADHD Adrenoleukodystrophy (ALD) Arteriovenous Malformation (AVM) Ataxia (International) Ataxia (U.S.A.) Atrial Septal Defect Brain Aneurysms Charcot Marie Tooth (CMT) Chiari Malformation Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Crohn's Disease Disabilities Eagle Syndrome Erythromelalgia Fibromyalgia Glossopharyngeal Neuralgia (GPN) Hepatitis C Lupus Multiple Myeloma Myositis Primary Sclerosing Cholangitis (PSC) Psoriatic Arthritis (PsA) Synovial Sarcoma Trigeminal Neuralgia (TN) Von Willebrand's Disease (VWD) Other Rare Diseases   What community can we create for you? Let us know at BensFriends.org

TNA | Young Patients Committee Support Group Chat

Young Patients Committee Support Group Chat This is the first support group chat for TNA's Young Patients Committee (YPC). The chat will introduce the YPC Board members, the mission of the YPC, and a discussion of our plans for the upcoming year. The chat will take place on Saturday, October 29th at 5:00PM EST Follow the link below to participate or call in at: 646-378-1284 YPC Support Group Chat TNA 408 W. University Ave. Suite 602 Gainesville, FL 32601 352-384- 3600

September 2011 Newsletter

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November 2010 Newsletter

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September 2010 Newsletter

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