FW: NVA Update: Feb 2008 - from Chris Veasley

[Guest guest]

Veasley wrote: This information may be of interest to your group members.Christin VeasleyAssociate Executive DirectorNational Vulvodynia AssociationDirect: 278 on Street, N. Kingstown, RI, 02852Headquarters: PO Box 4491, Silver Spring, MD, 20914 (phone) (fax)NVA UpdateFebruary 2008This e-newsletter is adapted from the winter 2007/2008 issue of the NVANews, published by the National Vulvodynia Association. It includes just afew of several important articles from the printed newsletter. A completetable of contents can be found below. If you are not a

current NVA donor,you can subscribe to the full printed version of this newsletter on_Fza7giaR7ca1s2rlN8b4y5PoaTa--mBvvs_O0IIIeyoPlCXRCuhlNG8nBmR-AW5XZo1CIbphE0FYRCo> NVA's web site. Please direct any comments, including a desire tounsubscribe to chris@....In this issue: NVA Year-End Review NIH Launches Vulvodynia Awarenes Campaign NVA Joins Forces with Gynecologic Cancer Activists Media Coverage of Vuvlodynia on the Rise NVA Funds Record Number of Research Studies Table of Contents - Winter 2007/2008 NVA News Support the NVA NVA Year-End Review NVA gained more ground this past year than ever before in its mission tofund research, educate the medical community and promote public awareness ofvulvodynia. We thank everyone who made a donation for contributing to thefollowing

accomplishments.NVA's Success on Capitol HillIn spring 2007, NVA successfully launched its third consecutive nationaladvocacy campaign. NVA supporters met with a majority of the Senatorsserving on the Health Appropriations Subcommittee and Representative Pelosi (D-CA), the first female Speaker of the House. In addition, thousandsof advocates sent letters and e-mails describing how vulvodynia impactstheir lives to more than 400 Congressional representatives. NVA staff targeted key members of Congress serving on health-relatedcommittees that oversee NIH appropriations. As a result of this effort,strongsvvBepcQZ24a9wUJYlHG1PiTiJOu3Cxk0UGxvtgI81rZboU7VuCagfIjiMpo0CtQF0MymBXV-FjxRYgJ_DzHTCDGJnwpeAqpRgtqXNbJ73t8TnJeR3AOpxnjoQ-16KX5qautSMCrOiGcBecdHhLGMKBYFaddkW6TfbJ-K0jZGZZ0nt-ORUk-m55MI8mu3mfyw8ZKuTbt5uOuspVPqRnaxl2vFog=>language on vulvodynia was included in both the House and Senate 2008 NIHAppropriations reports. After NVA's meeting with Rep. Lois Capps (D-CA),co-chair of the women's issues caucus, and Rep. Tammy Baldwin (D-WI),co-chair of the task force on women's health, Capps and Baldwin appealed toRep. Steve Israel (D-NY), co-chair of the cancer caucus, to includevulvodynia in an upcoming gynecological cancer briefing. Rep. Israel agreedand NVA became an active participant in the planning of the September 25thgynecological disorders briefing (see NVA Joins Forces with GynecologicCancer Activists below). Rep. Kennedy (D-RI), from Ms. Veasley'shome state, attended the briefing to show his support for

women's health;Rep. Kennedy and Ms. Veasley are now discussing the possibility of a RhodeIsland women's health forum in 2008. NVA also took the lead in encouragingjoint meetings with the Interstitial Cystitis Association and SenatorBarbara Boxer (D-CA), to discuss the inclusion of urogynecological disordersin a women's health bill that Sen. Boxer and other female Senators plan tointroduce in 2008. NVA has been lobbying for vulvodynia research funding and a nationalvulvodynia public awareness campaign for many years. Two years ago, Congressincluded language in the NIH Appropriations report directing the NIH todevelop aqwW4nMkvwI5vVvGAkXTToJXBSsD0E5jNMmrw-6d-BuWgX7H9-EY4wAxnP-QuBjhDJKQtqZKzV6dne5pRx0x-6EsPviE=> National Vulvodynia Awareness Campaign, in coordinationwith the NVA. On October 24th, after more than a year of

planning, the NIHOffice of Research on Women's Health (ORWH) launched the campaign at theNational Press Club in Washington, DC (see NIH Launches Vulvodynia AwarenessCampaign below).Online Tutorial for Healthcare ProfessionalsAs a result of generous support fromyH1d1zmeAoud_1xo01Po3XGkM1gYfmeztKHKxmfoP66yHHyEPDvFYdP8yqmISjvhQwEetpHVu91KqKpD> The Patty Brisben Foundation, NVA was able to revise and update itsonline tutorial for healthcare professionals (7DwsO-RvukRxkAYIuPZdfLRZ0Sn6-4rCX_Rtk1P2wlbNmHNaCYmE6DbVrPs=>http://learn.nva.org) and add CME/CE accreditation to the program. It isthe first online vulvodynia course to offer continuing education credits. Medical Research GrantsAs a result of successful fund-raising

appeals, NVA has awarded more medicalresearch grants this year than ever before. Until 2004, NVA was only ableto fund one study per year, but since then, we've doubled the number ofgrants awarded each year. In 2007 alone, NVA awarded nine new grants.Several of NVA's prior grant recipients have used their pilot data to obtainmulti-million dollar NIH funding. Detailed summaries of all these studiescan be viewed onQ1mYm01vklasR6yJCeMgQHnhD7dPbj029BJmDm-L1xx3bjO_727qi4IiISAzBTnXhWjOf78TQcMT1eAgvDKptPywHdmxWP-PAYvZGpKenXr9f-m5JL0KV6busnM=> NVA's web site. Dr. Stanley C. Marinoff Career Development AwardIn 2006, NVA created theLdfTj4NraF1kH-RY8j6UauevSn19Y0jURO97Fxie8kXYYyMxiyty441pceUZdtj_NKFh8Uck0VG12MZkeYgVSLtJauvPZIqRrlJ0pNyK-SXj-_QcZYKEIuXko509syNyQTYruA==> Dr. Stanley C.Marinoff Vulvodynia Career Development Award to encourage interested facultyto pursue a clinical and/or academic interest in vulvodynia. The awardprovides seed money to conduct medical research, write a publication, ordevelop a vulvar pain clinic. The ultimate goal of this program is toincrease the number of knowledgeable and qualified clinicians and scientistsin the vulvodynia field. For the second consecutive year, NVA solicitedapplications from the medical/scientific community and received severalexcellent proposals. NVA will announce an award recipient in early 2008. Other Outreach ActivitiesThe NVA exhibited at the 2007 national healthcare conferences of theAmerican Pain Society and the American Academy of Nurse Practitioners. NVAstaff and

volunteers disseminated hundreds of educational packets andanswered health care providers' questions. In November, NVA began working on an economic impact, or cost of illness,survey with a social worker from the Walter Army Medical Center. Thesurvey will estimate both the direct and indirect costs of vulvodynia,including costs associated with medical appointments, prescriptionmedications, over-the-counter remedies and time lost to work. Informationgathered in this survey will aid NVA in its future Capitol Hill efforts. Because of the many exciting developments in 2007, vulvodynia and the NVAwere featured in a variety ofaBqfl18y9-WPzL8PCgOgKrISQXj6Yz8ICUhmxCCWHxAlXNq0bzgHA9ZqdzOn-Q37w1_HOoCpiz-VaYri9DA5q680nfhsdBcuR_iLqLwm9Fu8v4hl> media venues,including Redbook, Healthand Prevention magazines, Canada's Globe &

Mail Newspaper, CNN HeadlineNews, ABC's hit television series, Private Practice, and multiple healthwebsites (see Media Coverage on the Rise below). Ongoing ProgramsIn addition to the initiatives described above, NVA maintains severalongoing programs and activities including, but not limited to, thefollowing. NVA has published 41 issues of its printed newsletter,ZtEncdNSkdWCe6aV4M-ZXnak7E92YZO5Ur7C-j7qY8Imm4m2HZ_PAS_KZccwb1GtiqMxPcYE3KV2ceGp_sLyKahDuFE=> NVA News, containing detailed articles by medical expertson the diagnosis and treatment of vulvodynia; the newsletter also featuresother articles relevant to women with vulvodynia, such as maintaining sexualintimacy, managing pregnancy and childbirth, and coping with chronic pain.Our newsletter is distributed to patients and health care providers, as wellas

other important contacts, including members of Congress and NIHadministrators. First published in 2004, the demand for NVA's self-help guide,hTrOHZkhnGMF-34jP-SBt1IvA7eiIiFAABZCPBagbo-ejHlXOxC_IywGdn8N8gWVXyJsQBA1qsYP4kw6S61XGRavHJMVUs8bDbHrLA==> I Have Vulvodynia. What Do I Need to Know?,continues to grow. This educational guide provides detailed information onvulvovaginal self-care, diagnosis and treatment of vulvodynia, and copingstrategies. It is available to women who contact us directly and to healthcare providers who order copies for their patients. NVA has disseminated 26 issues of its electronic newsletter,C8DYZa8EbscRGMME9FMfxhlFXvzqvpuW5GSzhvwoO97fjV04G7K9rji6i6s01qW1O-27AIa8mrN-2Rg35gDGQcyF7wpj9e6iYl0JWHv2jsax8z0ySqqaB56jrKdLJxnjy_CbQg==> NVA ResearchUpdate, to the medical and scientific community. This quarterly newslettersummarizes recent medical journal publications and includes periodic updateson upcoming conferences and research funding opportunities. In an effort to keep members informed about recent advances in research,publicity and Capitol Hill efforts, NVA sends its electronic newsletter, NVAUpdate, to patients, their family and friends, and other interested parties.These updates include 'action alerts," which notify NVA contacts that theirparticipation is needed at a certain time.Since its inception, NVA has developed and maintained ankEmWk9OsubFuiNsbvQv48Dxw9uCK19E_UaDIWfSST2uc1HdR6P3WwtC8zeq3zQnlLvIjXVQ8vOyugsqyVMwGGVkxNZZpomX85OoUl8QPbdKpnAvg> international support network as aresource for patients in need. Our network provides phone and e-mail supportin many areas, and monthly support group meetings in some locations.Currently, we have about 100 support leaders in place in the United States,Canada and several other countries.NIH Launches Vulvodynia Awareness CampaignAfter years of urging US Senators and Representatives to help NVA educatethe public about vulvodynia, Congress mandated the National Institutes ofHealth (NIH) to develop the firstqwW4nMkvwI5vVvGAkXTToJXBSsD0E5jNMmrw-6d-BuWgX7H9-EY4wAxnP-QuBjhDJKQtqZKzV6dne5pRx0x-6EsPviE=> National Vulvodynia Awareness Campaign. This campaigntargets primary health care professionals

and the general public, as well asvulvodynia patients.On October 24, 2007, after more than a year of preparation, Vivian Pinn, MD,director of the NIH Office of Research on Women's Health launched thecampaign at the National Press Club in Washington, DC. The press conferencewas attended by representatives from more thangrzFnXCJ8DkA01Rd3rdaKaUZeB-44qu1vGugnBLtUEdF8WIYbgNrkxfZVqRq2baCkUck6roSXm7fK68wB5rvNnPSenlrD6-NIjZajQ==> 30 partnering organizations and governmentagencies. The diverse group of partnering organizations includes theNational Women's Health Resource Center, the American College ofObstetricians and Gynecologists, the Society for Women's Health Research,the Center for Disease Control, the National Black Nurses Association andthe National Hispanic Health Association.Dr. Pinn outlined the goals of the

outreach campaign and introduced thepanel of eight speakers. Among the speakers were Hope Haefner, MD, directorof the University of Michigan's Center for Vulvar Diseases; Bernard Harlow,PhD, chair of the University of Minnesota's Division of Epidemiology andCommunity Health; Candace Brown, PharmD, MSN, professor of pharmacy,psychiatry and obstetrics and gynecology at the University of TennesseeMedical School; and Christin Veasley, NVA's Associate Executive Director.Dr. Harlow presented the findings of the NIH-funded vulvodynia prevalencestudy, and Drs. Haefner and Brown described vulvodynia's symptoms, diagnosisand treatment. The emotional high point of the event was Christin Veasley'sfirst-hand account of her eight year struggle with vulvodynia. You canHNgCz4b1E17El_4HGRVTd-PXE3R6x6tpEXu_fmvFOOogL7h0NCJ7yTdR4GZ7nssep_itYof4wE4JOtsjhEwrKs4HyfRkAHYaKRoDYi00_gs09TBdNfkhsoxqM_KMKvnX6Fba0QaLPsK1MZnU> readMs. Veasley's speech or7Pc_wgFq2Uq68cqxV3VSBxxk5mXNhqieHKQa8t_12qA5m76TWEYmyLu9Zt66YXYf1Lk23pv7lZblj1WU-zoUoQx5Dp_UQCd_UziHyA==> watch a videocast of the press conference onORWH's web site. The NVA, the NIH Office of Research on Women's Health and the NationalWomen's Health Resource Center have been leading the publicity campaign bycontacting editors and writers at popular magazines, newspapers, and healthand news websites. Following the launch event, for example, many internetsites, such as everydayhealth.com and earthtimes.org featured articles onvulvodynia and Dr. Berman discussed chronic vulvar pain on her Yahoohealth blog,c65esohHHsrjUSd9ItcUDgoaVHcfO8bjaQIsCCe4ovIPnuTxsN0r1BEqu1MiIZO1KQRoomIjUhsBV77ZboClpVNQBc3FbCm7gzcFTcqMHLSWI6bqnTSEmSkjkjvLBQrTuc_8qfKzMOPDp0deC0bUrsyL7qaaFdDF4HjKLg==> The Art of Intimacy. Reporter Darla wrote anarticle on vulvodynia for thevTl9mDhYdrtaPR7wWWrcN69Gt7De9J38Q6iZ3s4YNQt8_56lD4flZQlyaBjx81MgkQDvMuJDF5mjmeJuDTS8s5TWWBtCKmWXz9ZilF2MKYCFGhBiLyf8D750oPjeOKmxuZkbQpMnv5AO4chRyoYEbtpODsAnaFpMQ-C_PHWE91HnV2z3HJVvXZLvEfU=> Louisville Courier Journal and Oliviera, a New York journalist and NVA member, wrote an excellent piece fortheOtRLhOeKipY0H4EDnBMpYXdH6ef-MI5SfzHa_73mzsfRax1TAuL1EpC8Ou5vJbgqwLgrQTMUu5JBWUVxymbLgZM1UTSTt0-JJSyFkg==> New York City Independent Media Center.

One ofNVA's strongest proponents for the past 10 years has been PhyllisGreenberger, MSW, president of the Society for Women's Health Research(SWHR). Shortly after the campaign launch, Dr. Wider of the SWHRwrote an article on vulvodynia forie2imc0e5Y0wsxQovyInuh3h1iaDzE8gIhSkRw1fy55l7I6Vp-8QMvDtYWGkihaQpdPyVsIw9uig34MlDELkHbE6_r9ED8esmh8rknyqJJFryIGlK7C5oMfx8hVv7oANHy_zubGUpP2JSK35ZzoCMUBXf5UadrGad4u1Kw==> HealthNewsDigest.com, which was subsequently picked up bynumerous web sites, including Science Daily, AHN and MedHeadlines. InDecember, Dr. Pinn focused her monthly PodCast, Pinn Point on Women'sHealth, on vulvodynia. You canHkL0e6gjC-B1fRnLYviIdNJEAM9qLruVcB97YSri1FfmGxsZFCv08EJJNdCXQPKPc5iSfe6DpsjS1> download the PodCast orW1qQN62EPwxgRCWRLLAYuSkIHcTkq-yBxuigTt6mgXRpBj0r0_QPWTS4L5hat0w2umbkoBlJ39IYlzK_iNmfPsDxuvMPlcpWuY6Zmw==> read the transcript on ORWH's web site. If you would like to receive a press kit on vulvodynia, please e-mailaprilb@.... You can order the Vulvodynia Awareness Campaigninformation packet6-B69GsXQX3ltPy4Fb2EYdqHr5NkmxGgkgLcKadrOrm9fnf0UsY3HLlqUN_kez3uPWflaBFwp9JSJyYFgYI4Z4Z1BWw0Dba0VImPgucbuO-vonSM> online or by contacting the NIHResource Center at 1- or the National Women's Health ResourceCenter at www.healthywomen.orgdd60d7D-pI_mp1YDKjl_rwX31XV-ntOdWpCKlaiYAkbEyzpVyrzPXhhU9vwOPZynXckeQg==>or 1-.NVA Joins Forces with

Gynecologic Cancer ActivistsTo raise Congressional awareness of gynecological cancer and pain disorders,the US House of Representatives' Cancer and Women's Issues Caucusesorganized a briefing held September 25, 2007. The briefing was hosted byRepresentative Steve Israel (D-NY), co-chair of the Cancer Caucus. Emmy-nominated actress Fran Drescher described her personal experienceovercoming uterine cancer and the creation of the Cancer Schmancer Movement.Sherry Salway Black, executive director of the Ovarian Cancer NationalAlliance, discussed her battle with ovarian cancer and Dr. Schlegal,chair of the pathology department at town University Medical Center,gave an overview of cervical cancer and his work on the new HPV vaccine.NVA's associate executive director, Christin Veasley, focused herpresentation on vulvodynia, specifically addressing the problem ofmisdiagnosis, the stigma

associated with having a chronic vulvovaginaldisorder and the lack of research on treatments. She closed by outliningwhat Congress can do to help women with gynecologic pain disorders. You canread NVA's presentation8zPs2PU8d_2l7ToyLXh5jWcF70g3lwlceaRXykZFkf4MhX8dCwEfMsI6cTvzysT5zc-BSF5YOgeVMmcvvdTtwYUTwr1TWmiE8rvodQ==> here. Media Coverage of Vulvodynia on the RiseA prime-time television show, a cable talk show, the country's mostinfluential newspaper and two popular women's magazines have all tackled thesubject of vulvodynia in the last six months!In October, NVA approached renowned health columnist, Jane Brody, to writean article on vulvodynia. Our conversations in the months following led tothe article,PIa-U0h62CNpibGC5AAGVBIGAbQxCvNpXUie0epVa8wOSjdBFOPCK8uTgj5Lx0EUOu1gS4JDkn37R4f9jxQp17uKwljuHC_mq8oq9fRdRMB9fuah_b1VqjRMY9nGDi55-qawow==> New Insightsinto Genital Pain in Women, that appeared in the January 29, 2008 edition ofThe New York Times. In addition to the paper's daily circulation of 1.1million, Ms. Brody's column appears in nearly one hundred other newspapersaround the world. In the weeks following, the NVA and Ms. Brody have beenflooded with letters from grateful readers. One reader wrote, "Havingchronic pain is terrible, but not being believed is unbearable. Thanks forsending me this wonderful reminder that I am not alone, and I am not imagingthis condition."On October 10th, ABC's new hit show viewed by more than 12 million,e_oNvVYInw55IGIh16Up2zaB3MDd3zLcUas9bI79SaULpYdTqP6jAqIpwmnDCwEvSxRsFYqJ3xHRYo03TTQTIcTXdMYIyg1DdQXxUYLiw5TxwY0Rr7BxAbtoc4eJkSMGj4pXp3_nKdzj1-FyI5C640ml4mM=> Private Practice, dealt with vulvodynia by featuring a charactersuffering from a combination of vaginismus and vulvar vestibulitis. The showaccurately portrayed some of the symptoms of vestibulitis, but depicted anunrealistic "quick fix" for the condition. NVA issued arjxL8Q8cHGruHnOGls811iYn4WkT3WRYhWX5yT6pZix2s5-mH5nkPvvMgHU7WwxPqurVCOmhdO3f=== message truncated ===