Ovarian Cancer Research Alliance

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Ovarian Cancer Research Alliance
MottoResearch. Advocacy. Support.
Founded1994
FounderSol Schreiber
TypeNonprofit Organization / NGO
FocusOvarian cancer research
Location
  • New York, NY
ServicesCharitable services
Key people
Audra Moran, President & CEO
Jennifer Arminger, Treasurer
Jeff Boyd, Ph.D., Director
Robin S. Cohen, Vice President
John W. Hansbury, Esq., Chair
Tom Liebman, Director
Dana L. Mark, Esq., Secretary
Matthew Neal Miller, Director
Websitehttp://www.ocrahope.org
Formerly called
Ann Schreiber Ovarian Cancer Research Fund, Ovarian Cancer Research Fund, Ovarian Cancer National Alliance, Ovarian Cancer Research Fund Alliance

Ovarian Cancer Research Alliance (OCRA) is a not-for-profit organization focused on ovarian cancer research, advocacy and patient support[1]. The organization was formed in January 2016 when the former not-for-profit organization Ovarian Cancer Research Fund, which focused primarily on ovarian cancer research, combined with Ovarian Cancer National Alliance, which focused primarily on ovarian cancer advocacy and support programs, to form one organization[2].

History[edit]

The former Ovarian Cancer Research Fund (OCRF) was founded in December, 1994, as the Ann Schreiber Ovarian Cancer Research Fund by Sol Schreiber in memory of his wife, Ann, who died of ovarian cancer. The organization later became the Ovarian Cancer Research Fund. In 1997, Liz Tilberis, editor-in-chief of Harpers Bazaar and also battling ovarian cancer[3], became the organization’s first president. Liz, with help from Donna Karan, started the organization's signature fundraiser, Super Saturday, hosting the first one in 1998 in the Hamptons in New York. Prior to becoming Ovarian Cancer Research Fund Alliance, Ovarian Cancer Research Fund was the oldest and largest charity in the United States funding ovarian cancer research[4].

The former Ovarian Cancer National Alliance (OCNA) was founded in 1997 by the leaders of several ovarian cancer organizations[5]. Prior to becoming the eventual merge of the two organizations, OCNA was a leading ovarian cancer organization in the United States focusing on federal advocacy, awareness and patient support programs[6].

Research[edit]

As of December 2018, since inception of the original organization, OCRA has awarded 297 research grants to scientists at 73 medical institutions, totaling over $80 million[7].

The majority of ovarian cancer research funding in the United States comes from two government sources—the National Cancer Institute[8] and United States Department of Defense.[9] OCRA is the largest non-governmental funding source of ovarian cancer research. OCRA research grants are approved by a committee of gynecologic oncologists and scientists treating or studying ovarian cancer.[10]

Grant-Making Programs[edit]

Through grant-making programs, OCRA funds scientific research at cancer centers and academic research centers in the U.S. The first grants were awarded in 1998. OCRFA offers three research grants:

  • Collaborative Research Development Grant: OCRFA’s largest grant ($900,000 over three years) is for senior investigators with established research careers, and provides funding for large ovarian cancer research projects that involve several investigators within one institution or collaborations between groups in multiple institutions[11]. ($300,000 per year for three years)
  • Liz Tilberis Early Career Award: This award is for junior faculty, and supports a time commitment to research and academic endeavors in ovarian cancer[12]. ($150,000 per year for three years).
  • Ann and Sol Schreiber Mentored Investigator Award: This award was created in 2003, and funds clinical fellows or post-doctoral fellows working under the supervision of a mentor who is considered a leader in the field of ovarian cancer research[13]. ($75,000 over one or two years)

OCRA selects research projects through a peer-review process, conducted once each year by a panel of advisors called the Scientific Advisory Committee (SAC), which is chaired by Jeff Boyd, Ph.D., of Florida International University and Miami Cancer Institute[14].

Less than 10% of applicants are awarded grants. Institutions that have received the most grants include University of Texas MD Anderson Cancer Center, University of Pennsylvania, Fox Chase Cancer Center, Duke University, and Brigham and Women’s Hospital.

OCRA presents an educational webinar series featuring speakers on topics in ovarian cancer research and addresses clinical trial enrollment with an ovarian cancer clinical trial finder on its website.[15]

Advocacy[edit]

OCRA works with federal policy makers, including the President, Congress, and federal agencies like the Food and Drug Administration (FDA) and the Centers for Medicare and Medicaid Services (CMS). OCRA commits its resources to be a voice for ovarian cancer survivors and to significantly reduce the number of deaths from this deadly disease by advocating at the federal level[16] for:

  • Adequate and sustained funding for ovarian cancer research and awareness programs.
  • Legislation that improves quality of life and access to care for cancer patients[17].

Advocacy Day[edit][edit]

Advocacy Day takes place on Capitol Hill. Ovarian cancer survivors meet one-on-one with elected officials to share their personal stories as well as ask for support on a number of federal efforts aimed at sustaining or increasing funding for federal ovarian cancer research, awareness and support[18].

Support[edit]

OCRA's support programs focus on helping women and their families before, during and beyond diagnosis.

Survivors Teaching Students: Saving Women’s Lives®[edit][edit]

Survivors Teaching Students: Saving Women’s Lives® aims to educate future healthcare professionals — physicians, nurse practitioners, nurses and physician assistants — to increase their understanding of ovarian cancer symptoms and risk factors so that they will be able to diagnose the disease when it is in its earlier, most treatable stages[19].

Ovarian Cancer National Conference[edit][edit]

The OCRFA Ovarian Cancer National Conference provides expert sessions on topics such as clinical trials, early detection, and treatment through various forums and lectures from renowned clinicians and researchers. Survivors and their families also can attend workshops and events on issues about living with ovarian cancer.

Woman to Woman Program[edit][edit]

In 2011 the former OCRF began a national expansion of Woman to Woman, a local program originating at Mount Sinai Hospital[20]. This program pairs volunteer gynecologic cancer survivors with women recently diagnosed and actively going through treatment, and offers information and support for caregivers[21]. Woman to Woman program sites are selected through an application process. OCRFA gives each selected institution a one-year, $50,000 grant to cover the cost of a part-time program coordinator, with remaining funds allotted to a patient fund. Newly established Woman to Woman programs are expected to become self-funding after the first year[22].

Community Partner Program[edit][edit]

OCRFA works with not-for-profit organizations across the United States to share information and put forth a unified national voice for the ovarian cancer movement. This program was established by the former Ovarian Cancer National Alliance and was formerly called the Partner Member Program.[23]

Events[edit]

The first OCRF ovarian cancer awareness broadcast and print public service announcements[24] were created in partnership with L'Oréal and featured Andie MacDowell.[25] Since then, OCRA has been included in print[26] and online publications, including books,[27] national and international magazines and local newspapers, as a resource for ovarian cancer information.

Contributions to public discourse on ovarian cancer in are done through various forums, including Letters to the Editor in The New York Times.[28][29]

The organization has four signature events. The earliest established, called Super Saturday, is an annual fundraiser held in Water Mill, New York. Super Saturday was founded in 1998 by fashion designer Donna Karan, and late OCRF President and Editor-In-Chief of Harper's Bazaar, Liz Tilberis. It is dubbed the "Rolls-Royce of garage sales"[30] by The New York Times, and has been hosted by Kelly Ripa and sponsored by Donna Karan, QVC and InStyle. Super Saturday includes a "garage sale" of new designer products, a live on-site QVC broadcast, a children's carnival, and other activities. In 2013, Super Saturday raised $3.5 million[31] for Ovarian Cancer Research Fund.

The Legends Gala was sponsored for several years by L'Oréal Paris, and is held every other year. A 2011 Gala was held at the American Museum of Natural History, and was hosted by Julianna Margulies. The gala has raised nearly $19 million since 2002,[32] and typically honors individuals from a range of industries. Past honorees have included Sherry Lansing, Trudie Styler, Terry Lundgren, and Kathy Black.

A signature "Stand Up for Madeline and OCRA" comedy event is held annually in tribute to Madeline Kahn, who died from ovarian cancer. Her husband, John W. Hansbury, joined the Board of Directors of Ovarian Cancer Research Fund and created the comedy event[33] which is held at Carolines on Broadway.

In 2012, Ovarian Cycle, formerly an independent 501(c)3 nonprofit, became a signature event series of the organization.[34] Ovarian Cycle had previously held indoor cycling events to raise money for ovarian cancer research with the organization a national charity recipient of a portion of Ovarian Cycle's annual fundraising.

Partners[edit]

Through corporate sponsorships and cause-marketing campaigns, the organization has received support from a variety of companies. Some sponsors have included QVC, L'Oreal Paris, Electrolux, Alex and Ani, and LeSportsac.

Accountability[edit]

Ovarian Cancer Research Alliance has a four-star rating from independent charity evaluator, Charity Navigator, and ranks among the top 10% of all four-star rated charities.[35] OCRA is also a Better Business Bureau Accredited Charity that meets the BBB Wise Giving Alliance accreditation standards for charity accountability, and has had their seal since 2010.[36] Ovarian Cancer Research Alliance is a Silver-level GuideStar Exchange participant.[37] In October 2012, SELF magazine ranked then-OCRF as one of the three best cancer charities.[38]

References[edit]

  1. ^ "Ovarian Cancer Research Alliance - GuideStar Profile". www.guidestar.org. Retrieved 2018-12-06.
  2. ^ "Ovarian Cancer Research Alliance - GuideStar Profile". www.guidestar.org. Retrieved 2018-12-06.
  3. ^ Lennon, Christine (2009-06-03). "Ovarian Cancer: Fighting for a Cure". Harper's BAZAAR. Retrieved 2018-12-06.
  4. ^ "New Stand Up To Cancer-OCRF-OCNA-NOCC Ovarian Cancer Dream Team announced". EurekAlert!. Retrieved 2018-12-06.
  5. ^ "Ovarian Cancer National Alliance". Cancer Connect. Retrieved 2018-12-06.
  6. ^ "Resources - Susan Marie Rupp Foundation".
  7. ^ "Good News at Fred Hutch".
  8. ^ "Research Funding". National Cancer Institute. 2018-02-16. Retrieved 2018-12-06.
  9. ^ "Ovarian Cancer Research Program, Congressionally Directed Medical Research Programs". cdmrp.army.mil. Retrieved 2018-12-06.
  10. ^ "Charity Navigator - Rating for Ovarian Cancer Research Fund Alliance". Charity Navigator. Retrieved 2018-12-06.
  11. ^ "Collaborative Research Development Grant - Ovarian Cancer Research Fund Alliance | Research | Weill Cornell Medicine".
  12. ^ "Van Andel Research Institute's Hui Shen receives ovarian cancer research award". VAI. 2015-11-18. Retrieved 2018-12-06.
  13. ^ admin. "New Researcher at The Hormel Institute Awarded Ovarian Cancer Research Grant". The Hormel Institute. Retrieved 2018-12-06.
  14. ^ "Miami Cancer Institute Names Jeff Boyd, PH.D., Director of Translational Research and Genomic Medicine".
  15. ^ "Emergingmed". app.emergingmed.com. Retrieved 2018-12-06.
  16. ^ "Michigan Ovarian Cancer Alliance Homepage". www.mioca.org. Retrieved 2018-12-06.
  17. ^ "Providing Education | MOCA". mnovarian.org. Retrieved 2018-12-06.
  18. ^ "Ovarian Cancer Alliance of Oregon & SW Washington - Advocacy Day 2015 in Washington DC". www.ovariancancerosw.org. Retrieved 2018-12-06.
  19. ^ "Survivors Teaching Students® | MOCA". mnovarian.org. Retrieved 2018-12-06.
  20. ^ "OBGYN Support Programs | Mount Sinai - New York". Mount Sinai Health System. Retrieved 2018-12-06.
  21. ^ "The OCRF Woman to Woman Program".
  22. ^ "Ovarian Cancer Research Fund Alliance: Woman to Woman Grant Program : The Grant Plant, Inc. New Mexico". www.thegrantplantnm.com. Retrieved 2018-12-06.
  23. ^ "Partners of Colorado Ovarian Cancer Alliance".
  24. ^ Rodale, Inc. (April 2006). Women's Health. Rodale, Inc. pp. 49–. ISSN 0884-7355.
  25. ^ iSpot.tv, Ovarian Cancer Research Fund TV Spot Featuring Andie MacDowell
  26. ^ "The Big O," Prevention, September 2011, Catherine Winters, p.96-105
  27. ^ Margaret I. Cuomo (12 October 2012). A World Without Cancer: The Making of a New Cure and the Real Promise of Prevention. Rodale. pp. 283–. ISBN 978-1-60961-886-5.
  28. ^ "Doubt About Ovarian Cancer Screening," The New York Times, The Opinion Pages, September 20, 2012
  29. ^ "Ovarian Cancer," The New York Times, The Opinion Pages, March 20, 2013
  30. ^ "On The Meadow: Rolls-Royce of Garage Sales," The New York Times, Style, August 4, 2002
  31. ^ "Shopping for a Cause, a Hamptons Tradition," The Wall Street Journal, Heard & Scene, July 30, 2013
  32. ^ "L'Oreal Paris Legends Gala Raises $2.3M," Women's Wear Daily, November 3, 2011
  33. ^ Standing up for Madeline: Ovarian Cancer Research Fund
  34. ^ Ovarian Cancer Research Fund Announces National Expansion With Ovarian Cycle: Ovarian Cancer Research Fund
  35. ^ Charity Navigator: Ovarian Cancer Research Fund
  36. ^ Better Business Bureau: Ovarian Cancer Research Fund
  37. ^ Guidestar: Ovarian Cancer Research Fund
  38. ^ "Give Back and Make it Count", SELF Magazine, October 2012, Marjorie Korn, p.130

External links[edit]