TNA SUPPORT GROUP



r125Chief Executive OfficerJohn KoffBoard of DirectorsDavid Meyers, ChairmanAnne Ciemnecki, SecretaryClaude M. AldridgeMelissa AnchanRamesh P. Babu, MDJeff BodingtonHenry A. Gremillion, DDSJeffrey Fogel, MDAlly KubikRay RiveraJohn TempleEric WertheimMedical Advisory BoardJeffrey A. Brown, MD National ChairmanDavid A. Sirois, DMD, PhD Dental ChairmanJohn M. Tew, Jr., MD Mid-West DirectorMark E. Linskey, MD Western DirectorJohn F. Alksne, MDNicholas M. Barbaro, MDKenneth F. Casey, MDSteven D. Chang, MDGary D. Klasser, DMDMichael Lim, MDDonald R. Nixdorf, DDS, MSJulie Pilitsis, MD, PhDRaymond F. Sekula, Jr, MDKonstantin V. Slavin, MDGary Stanton, MDHarry Van Loveren, MDRichard S. Zimmerman, MDDear Friend of FPA,Thank you for your interest in starting a FPA Support Group in your area. Welcome to the growing FPA Support Network across the country. For those affected by trigeminal neuralgia and related facial pain - patients, their spouses, family, friends and health professionals - local FPA Support Groups provide information, mutual aid and encouragement. These groups let all involved know that they are no longer alone; they can now share their experiences and feelings with others having the same problems. Please complete the Support Group Leader Questionnaire, which is enclosed.Once reviewed, we will help you proceed with the next step of informing others in your area about the formation of a new FPA support group.The FPA Board of Directors is very appreciative of the efforts and the services provided by our local FPA Support Groups. Without the interest and participation of caring individuals like you, these groups would not be possible. We recognize and value your commitment and will be available to assist your efforts in any way that we can. Sincerely,Cindy Ezell Cindy EzellFPA Patient Services Coordinator22 SE Fifth Ave., Suite D Gainesville, FL 32601 Phone: 800-923-3608E-mail: cezell@tna-BackgroundVery often, healthcare professionals lack the necessary knowledge about TN or other neuropathic facial pain conditions to help. This, along with the impact of managed care, demand that facial pain and TN patients take more responsibility for their health care by becoming empowered to make better informed health decisions. The FPA Support Group (SG) network embodies one part of FPA’s effort to address these needs in a compassionate, caring and focused manner. FPA SGs work in local communities to support the FPA Mission:The mission of FPA is to serve as an advocate for patients living with TN and related facial pain conditions by providing information, encouraging research and offering support.To fulfill its mission, FPA’s goals are:To provide information, and to support and encourage those who are afflicted with TN and related facial pain conditions, and their families, by assisting in the development of support groups and personal contacts.To encourage sound research on the causes of TN and related facial pain conditions and the results of current treatments; and to disseminate this information widely among the medical and dental professions and to the interested public.To urge the continuing search for new medications and treatment.To advocate the development of effective pain management techniques among professional health care providers for those with ongoing pain from TN and related facial pain conditions.To advocate for public policy which is supportive of the needs of those with rare disorders. TNA OrganizationThe Trigeminal Neuralgia Association was incorporated on July 9, 1990 in the State of New Jersey and received its 501-C3 determination status as a nonprofit tax-exempt organization from the IRS on March 7, 1991. The initial incorporating board was composed of individuals who had been directly affected by trigeminal neuralgia either as a patient or as a family member of a patient. The current board of directors now includes additional expertise that supports the general efforts of the Association. The Medical Advisory Board is composed of key specialists in the areas of medical and surgical treatment of TN, dentistry and pain management. In 2002 TNA expanded its mission to include other types of neuropathic facial pain. In an effort to reflect TNA’s Mission, the name was officially changed in 2008 to TNA - Facial Pain Association, and in 2012 changed to just the “Facial Pain Association”.All updated lists can be found on the FPA Website: Board of DirectorsVolunteerMedical Advisory BoardVolunteerStaffPaidSupport Group LeadersVolunteerTelephone Support ContactsVolunteerFPA Staff – January 2019John Koff – CEO Nancy Oscarson – Office ManagerMitzi Korb – Membership & Conference Registration Amy Turner – Director of Development* Cindy Ezell – Patient Services * Pam Neff, RN – Patient Services* Part-time Staff SGs make it possible for face pain patients to know that they are no longer alone and to allow them to share their experiences and feelings with others having the same problems. It is often said that only those who have personally experienced this painful condition can truly understand.SGs provide information to their participants about the nature of the disorder through scheduled meetings DVDsbooks printed material from the FPA national officedoctors and dentists in the group’s geographic areaHow does a support group get started?Typically, a SG develops in a community where there are a number of TN and/or face pain patients and where there is no existing FPA group. The impetus usually comes from a patient or family member who has the time and the inclination “to get involved”. WHAT DOES IT TAKE TO BECOME A SGL?Generally, it takes someone who feels that he or she can make a difference in the lives of TN and facial pain patients and is willing to give of him or herself for that purpose. However, a generous spirit by itself won’t get the job done. There are attributes that allow a SGL to develop a successful and flourishing SG that fulfills FPA’s Mission. As local volunteer leaders, it is important that FPA SGLs have skills that help ensure the success of the group, both as it begins and as it grows. To that end, the following list of criteria is recommended: ?Passion – for giving back and helping those with facial painTime – to devote to SG workHealth – good enough to allow SG work Responsiveness – willing to respond to telephone calls and email messagesFPA Mission – fully supportive of FPA’s missionTreatments – equally presents all treatment options to SG participants and not advocate for one treatment planTechnology – access to and familiarity with a computer.? Ability to correspond regularly and consistently via email and download documents in Word and Excel. Email is the primary source of communication between SGLs and FPA. While FPA assists in the early stages of SG development, in the long-term, a SG needs to be as self-sufficient as possible. This involves computer literacy and an Internet connection. If a SGL is not computer literate, they usually ask a family member, another SG member, and a friend or community resource to be their link to the internet. There is information from the national office that is available only on the internet or via email.Reporting – completes reports to FPA in a timely manner?There are also benefits to participating in FPA as a local volunteer leader:Patient contact – Many friendships are made with others who understand what you’re experiencing. Helping others – allows SGLs to positively touch the lives of manyLearning opportunities – from FPA, other SGLs, patients, families, Medical Advisory Board (MAB) members, other healthcare providers, etc. Facial Pain AssociationSupport Group Leader ProfileDate:Full Name:Address:City:State:Zip:Daytime Phone:Home Phone:Internet Access: FORMCHECKBOX Yes FORMCHECKBOX NoEmail:Date of Birth:Gender: FORMCHECKBOX Male FORMCHECKBOX FemaleCurrent Occupation:May patients call you at both phone numbers? FORMCHECKBOX Yes FORMCHECKBOX NoIf not, which number should be listed? FORMCHECKBOX Day FORMCHECKBOX HomeMay patients contact you at your e-mail address? FORMCHECKBOX Yes FORMCHECKBOX NoAre you familiar with our website? FORMCHECKBOX Yes FORMCHECKBOX NoPrevious volunteer experience with other organizations? FORMCHECKBOX Yes FORMCHECKBOX NoPersonal History With TN/Facial painHave you been diagnosed with trigeminal neuralgia? FORMCHECKBOX Yes FORMCHECKBOX NoIf not, are you the spouse of a TN patient? FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX OtherHave you been diagnosed with another facial pain condition? FORMCHECKBOX Yes FORMCHECKBOX NoIf yes, what condition do you have?When were you or the patient first diagnosed?Do you have a working knowledge of TN, other facial pain conditions and the available medical and surgical options? FORMCHECKBOX Yes FORMCHECKBOX NoHave you or the patient had any surgery to correct the condition? FORMCHECKBOX Yes FORMCHECKBOX NoIf yes, which procedures were performed? When?Balloon CompressionGamma Knife SurgeryGlycerol InjectionMicrovascular DecompressionRadio FrequencyOtherAre you or the patient currently pain free? FORMCHECKBOX Yes FORMCHECKBOX NoIf not, are you or the patient currently using any medication for TN or other facial pain condition? FORMCHECKBOX Yes FORMCHECKBOX NoHave you had experience with alternative therapies? Please explain below.AcupunctureAlpha Stem UnitUpper Cervical ChiropracticVitamin SupplementsOtherWhat types of pain have you or the patient experienced with TN or related facial pain conditions?Classic Trigeminal NeuralgiaAnesthesia DolorosaAtypical/NeuropathicBilateral PainGeniculateGlossopharyngealOccipitalPost-Herpetic NeuralgiaRelated Facial Pain ConditionTrigeminal HeadacheOtherAre there any other specific conditions or circumstances related to your trigeminal neuralgia or related facial pain condition?Child with TNYoung Adult 20-30Pregnancy & TNTMJ & TNTrauma & TNSocial Security DisabilityTumors & TN LupusLyme DiseaseStroke, then TNOtherAre there any other comments you’d like to make or anything else you’d like to tell us about yourself and your experience with trigeminal neuralgia or related facial pain conditions? FORMCHECKBOX I want to become a Support Group Leader if there is a vacancy in my area and understand that my name and contact information will be published on FPA’s website and in packets sent out to new patients should I be selected as a Support Group Leader FORMCHECKBOX I want to become a Telephone Support Contact and understand that my name and contact information will be published on FPA’s website and in packets sent out to new patients should I be selected as a Telephone Support Contact.SignatureDateThank you for your time and interest in helping others with trigeminal neuralgia and related facial pain conditions. Please return this form to:Facial Pain Association22 SE Fifth Ave, Suite DGainesville, FL 32601-7092Or email to: cezell@ ................
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