About Us
History

Major Milestones in the History of the National Vulvodynia Association

• The NVA is founded by 5 vulvodynia patients in the Washington DC area.
• Tax-exempt status is obtained by the federal government.

• NVA forms support network.
• First visit to Capitol Hill is made to brief congressional staff members on vulvodynia and the urgent need for research funding.

• NVA co-organizes the first vulvodynia symposium with the National Institutes of Health (NIH).
• NVA awards first pilot research grant to scientist at Johns Hopkins University.
• NVA meets with Senator Tom Harkin on Capitol Hill to request support for research funding from the NIH.

• Language on vulvodynia is included for the first time in the NIH Appropriations Report from the Department of Labor, Health and Human Services of the federal government.
• First Program Announcement (PA) is issued by the NIH announcing their interest in funding vulvodynia research.
• NVA awards second pilot research grant to scientist at the University of Rochester.

• CBS Television airs program featuring vulvodynia support group leader.
• NVA exhibits educational materials to health care practitioners at first national health conference.

• First Request for Proposals (RFA) issued by the NIH, allocating $5 million for vulvodynia research over 5 years.
• NIH awards first vulvodynia research grants to four scientists at Harvard University, Robert Wood Johnson, Yale University and the University of Michigan.
• NVA awards $30,000 to two pilot studies at Cornell University and the University of Rochester.
• Vulvodynia featured on the Oprah Winfrey Show and NVA receives 10,000 web site hits in less than one week following broadcast.

• NVA visits Captiol Hill twice to meet with Senator Tom Harkin and Representatives Bill Young and Ralph Regula.
• NIH awards fifth research grant to scientist at Johns Hopkins University.
• First preliminary prevalence data on vulvodynia is published in the American Journal of Obstetrics and Gynecology.
• NVA meets with representatives from the pharmaceutical industry to encourage new drug development and inclusion of vulvar pain patients in clinical trials.
• NVA participates in two national health care conferences including the American College of Obstetrics and Gynecology (ACOG) annual meeting.
• Vulvodynia featured on HBO's Sex and the City.
• Susanna Kaysen writes a personal memoir, The Camera My Mother Gave Me, on her experience with vulvar pain.

• Sixth research study funded by the NIH at the University of Rochester.
• NVA's executive director, Phyllis Mate, and medical advisory board member, Ursula Wesselmann, participate in planning of the NIH's second symposium on vulvodynia to be held in Spring 2003.
• NVA exhibits at three national health care conferences including the American Medical Women's Association (AMWA), American Pain Society (APS) and the Congress on Women's Health.
• NVA facilitates meetings with representatives from the pharmaceutical industry to encourage drug development and inclusion of vulvodynia patients in clinical trials.
• The first vulvodynia self-help book, The Vulvodynia Survival Guide, written by Howard Glazer, PhD and Gae Rodke, MD, is published.
• The first comprehensive book on vulvovaginal health, The V Book by Ellizabeth Stewart, MD, is published.

• 2nd NIH workshop held in April (NVA executive director and medical advisory board member serve on planning committee)
• Dr. Bernard Harlow, Harvard epidemiologist, publishes data from his NIH-funded study, indicating that millions of American women suffer from chronic vulvar pain.
• NVA funds two studies focusing on the etiology and treatment of dysesthetic vulvodynia.
• NVA meets with staff from the Society for Womens Health Research.
• NVA briefs congressional health staffers about vulvodynia on Capitol Hill.
• NVA participates in national pain awareness campaign, Partners for Understanding Pain.
• NVA's web site receives tens of thousands of visitors after vulvodynia is featured in news pieces on salon.com, National Womens Health Report and WebMD.
• NVA exhibits at the national healthcare conferences of the American Academy of Pain Medicine and the American Physical Therapy Association.

• NVA funds two studies focusing on the etiology and treatment of vulvodynia.
• 3rd national conference on vulvodynia held in Atlanta, Georgia (NVA staff serve on planning committee).
• NVA publishes 24-page educational guide for patients.
• Vulvodynia featured in Good Housekeeping and Ladies' Home Journal magazines (combined circulation of 9 million).
• NVA exhibits at the national healthcare conferences of the American College of Obstetricians and Gynecologists, American Academy of Pain Medicine and the American Medical Women's Association.

• Seventh research study funded by the NIH at the University of Michigan.
• NVA meets with the American College of Obstetricians and Gynecologists to discuss collaborative educational efforts.
• NVA works with the Society for Women's Health Research on Congressional briefing (June 2005).
• NVA meets with NIH Pain Consortium to discuss current status of vulvodynia research.
• NVA organizes its first National Advocacy and Awareness Week; women from 20 states meet with their Congressperons to garner support for vulvodynia awareness and research (May 2005).
• Vulvodynia featured in Woman's Day and Fitness magazines (combined circulation of 5 million).

2006

• Eighth and ninth research studies funded by NIH at the University of Kansas and the University of North Carolina.
• NVA executes its second annual National Advocacy and Awareness Week with great success (April 2006).
• NVA works with Representative Ralph Regula, Chairman of the US House of Representations Appropriations Committee, to get language on vulvodynia include in the House’s Appropriations Report for the first time in history.
• NVA meets with NIH to begin planning a national educational awareness campaign on vulvodynia that was requested by Congress in 2005.
• American College of Obstetricians and Gynecologists published the first-ever Committee Opinion on vulvodynia in its clinical journal, Obstetrics & Gynecology.
• NVA exhibits at the national healthcare conferences of the American College of Obstetricians and Gynecologists and the American Academy of Pain Management. 
• NVA establishes a new funding program for the medical community - The Dr. Stanley C. Marinoff Vulvodynia Career Development Award – in an effort to encourage interested faculty to pursue their clinical and/or academic interest in vulvodynia.  NVA funds two applicants and helps to establish three new vulvar pain clinics in Michigan, New Jersey and Washington DC.
• NVA raises record amount of money to support medical research and subsequently awards a record number of research grants.

2007

• NIH launches first-ever national vulvodynia awareness campaign, requested by Congress in 2005.
• NVA executes its third annual National Advocacy and Awareness Week with great success.
• NVA works with Representative Steve Israel (D-NY) on Congressional briefing on gynecological cancer and pain disorders.
• NVA launches first-ever CME/CE accredited online tutorial for health care providers.
• NVA exhibits at the national healthcare conferences of the American Pain Society and the American Academy of Nurse Practitioners.
• Vulvodynia is featured on ABC’s primetime show, Private Practice, and in several popular magazines, including Prevention and Redbook.