THIS IS NOT JUST A RIBBON

IT’S A PROMISE 2009 Annual Report

INTRODUCTION: MISSION

FROM THE CEO

Since 1997, the Ovarian Cancer National Alliance has advanced the interests of women with ovarian cancer. To accomplish this, we serve as the bridge between the medical, research and legislative communities and the ovarian cancer community.

The year 2009 began under an economic cloud that seriously threatened nonprofit organizations. Despite that challenge, for us, the year ultimately proved to be one of progress and accomplishment on many fronts. We maintained and strengthened our focus on:

We unite individuals and 45 organizations at the local, state and regional level in efforts to:

We are proud to have made the most of our opportunities to do both, while being the go-to organization for ovarian cancer information and support. With a growing number of supporters and Partner Members as well as expanding programs and resources, the Ovarian Cancer National Alliance is well positioned to help those affected by ovarian cancer.

• Advocate for evidence-based medical care and reimbursement for medically necessary interventions;

Unlike other women’s cancers, there has not been a significant decline in ovarian cancer’s mortality rate in more than 30 years. Through advocacy, education and awareness, we are trying to affect meaningful change. Though resources are always in short supply, we continue to be responsible stewards of our community’s trust and focus our efforts on those opportunities that have the greatest potential.

• Advocate for increased federal funding for ovarian cancer research that will lead to an effective early detection test, better treatment and ultimately a cure; • Raise awareness that early recognition of symptoms is the best way to save lives; and • Educate medical professionals about ovarian cancer diagnosis and the need to provide referrals to gynecologic oncologists.

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Advocating on Capitol Hill for increased research funding for ovarian cancer by keeping this disease in the forefront of legislators’ consciousness and legislative action; and Keeping awareness high about the symptoms of ovarian cancer so women’s lives can be saved through education and early detection.

There is still much to do, and we look forward to another year of working with you to advance the interests of women with ovarian cancer.

Sincerely yours,

Karen Orloff Kaplan, MSW, MPH, ScD Chief Executive Officer

FROM THE PRESIDENT I lost a dear friend to ovarian cancer, and I decided that if I could change this tragic outcome for other women, I would. For the past two years, it has been my privilege to serve as President of the Board of Directors of the Ovarian Cancer National Alliance. These have been years of profound change and progress. To be a part of this evolution has been a hallmark of my life. The Ovarian Cancer National Alliance has matured into a dynamic, nationally respected, wellmanaged organization that is responsible to its constituents and its donors. We are twelve years strong--and growing stronger--thanks to the help of our many friends, survivors and supporters who see the value in our work. We are an organization built on the hopes of nearly 175,000 women in this country who live with ovarian cancer – women who desperately seek a better quality of life and who refuse to accept their fate as the future for our daughters and granddaughters.   Our unique position gives us perspective that is distinctive. Not only do we stand at the intersection of policy, law, medicine and women – we stand in the shoes of survivors. I am honored to be part of this growth, and will work toward its continued success in the coming years, advancing the interests of women diagnosed with ovarian cancer. Although I will be passing the torch to others, I remain committed to keeping the flame alive. The teal ribbon is more than a symbol of solidarity with the ovarian cancer community. It is a promise to do all we can to help find an early detection test and ultimately a cure for a disease that takes the lives of 15,000 women a year. In the more than 30 years since the War on Cancer was declared, survival rates have not significantly improved. This statistic is alarming, and it is our mission to advance the interests of women diagnosed with ovarian cancer and see meaningful improvement in survival rates.

Sincerely yours,

Judith Abrams President

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2009 ACCOMPLISHMENTS Our Advocacy leadership continued to bring the voice of ovarian cancer patients and their loved ones to the federal government. •

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The Ovarian Cancer National has really made a difference raising our nation’s awareness the needs of women who experienced ovarian cancer finding the resources eliminate this disease.

Education remained a priority and the programs grew significantly. •

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Alliance in of have and to

We took a bold stance and provided a downloadable symptoms diary for women, and working through our medical advisory committee, published guidance for women and their doctors about diagnositic protocols. Our annual Conference, held in July, was the best attended of any to date. Thought leaders, researchers, clinicians and survivors joined to learn, share and collaborate about how to improve the lives of those touched by ovarian cancer. Ovarian cancer survivors taught more than 2,000 medical students as part of our Survivors Teaching Students: Saving Women’s LivesSM program. We increased the number of scholarships to our annual Conference—the largest national forum where patients, survivors and scientists discuss progress in the battle against ovarian cancer.

We expanded our ability to increase Awareness about ovarian cancer. •

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- Dr. Robert Bast, MD Anderson

Through our ongoing efforts we helped ensure that our government appropriated $20 million for the Department of Defense Ovarian Cancer Research Program in Fiscal Year 2009—double the previous year’s appropriation. We went to meetings at the White House, Congressional hearings and professional conferences to represent the needs of the ovarian cancer community. More than 100 survivors and their families visited members of Congress to carry the ovarian cancer message during our annual Lobby Day.

We launched our new website, which is easy to navigate and well organized. Those interested in learning, donating, sharing and shopping, can find everything they need including clinical trials, health education, online communities and advocacy information. Our annual Gala exceeded all expectations and brought together the Women Chefs and Restaurateurs of greater Washington, DC for an evening of delicious camaraderie. We continued to modernize communication using Facebook, Inspire, Capwiz and Twitter, providing visitors a means to be in community with others; learn about late breaking news and events; and get involved in real time with legislators, survivors, friends and family. We received support from a number of celebrities, including Janet Jackson, Kathy Bates, Jack LaLanne and Rachel Zoe, providing leadership to highlight the seriousness of this disease.

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There are times, especially when everything is hectic, where we can tend to get lost in the weeds of internal politics.  It’s people like you, those who take the time to come meet with us and share personal stories, that remind us that what we’re working on affects real people.  It’s what keeps us all grounded.

ADVOCACY

- Senate Staffer, after a Lobby Day visit

As the advocacy organization that focuses on federal issues important to the ovarian cancer community, the Ovarian Cancer National Alliance is committed to working with Congress and Federal agencies to improve quality of life and outcomes for women with ovarian cancer and their families. We work to increase access to health care, improve the nation’s health care system and secure funding for ovarian cancer research and awareness programs. In 2009, our work proved especially successful. • •

The President and Congress once again recognized September as Ovarian Cancer Awareness Month. The Ovarian Cancer National Alliance worked to ensure that Congress continues to fund three important ovarian cancer programs - Johanna’s Law: The Gynecologic Cancer Education and Awareness Act, the Ovarian Cancer Control Initiative and the Ovarian Cancer Research Program.

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I have been fighting the fight for 12 years diagnosed in stage 3 and had 2 recurrences - all I can say is Thank You, Thank You, Thank you. For this and all you do, Thank you!

- P.L. upon the announcement that PET scans would be covered by Medicare for women with ovarian cancer

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Our annual Conference offered a chance for those affected by ovarian cancer to participate in a Lobby Day on Capitol Hill. After being trained, more than 100 survivors, family and friends had breakfast with Representatives Dan Burton (IN), Rosa DeLauro (CT) and Darrell Issa (CA) before meeting with their elected officials to share their personal stories and ask for support on a number of essential Federal efforts. In addition to Federal legislative issues, the Ovarian Cancer National Alliance is active in important regulatory issues such as Medicare coverage and drug approval. The Ovarian Cancer National Alliance worked diligently with the Centers for Medicare and Medicaid Services (CMS) to ensure coverage for PET scans for ovarian cancer patients. CMS approved coverage in April, 2009. We were invited to the White House a number of times to represent the ovarian cancer community. We testified in front of House and Senate panels regarding the need for increased awareness and research on ovarian cancer.

Ovarian cancer is the most lethal gynecologic cancer and the fifth deadliest cancer among women. The American Cancer Society estimates that each year approximately 22,000 women in the United States are diagnosed with ovarian cancer and almost 15,000 die of the disease because, unlike many other women’s cancers, a reliable early detection test does not exist. The five-year survival rate for diagnosis at a late stage is 28 percent; however, the survival rate goes up to 93 percent when ovarian cancer is diagnosed at an early stage, reports the American Cancer Society. Yet fewer than 20 percent of women with ovarian cancer are diagnosed at an early stage.

SURVIVORS TEACHING STUDENTS: Saving Women’s Lives

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The Ovarian Cancer National Alliance implements and manages the Survivors Teaching Students (STS) program. As part of the program, survivors share their experiences with medical students and other healthcare professionals to help them gain a better understanding of ovarian cancer symptoms and risk factors. With the help of the Entertainment Industry Foundation, the program is taught in schools across the country.

EDUCATION

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The latest presentation was outstanding. The students were completely engaged and very interested and passionate... they were really inspired to take action in every way... If you ask the speakers, I think they will agree that this was a very valuable experience all around. More valuable for us, the students were so riveted. - Columbia University School of Nursing

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During 2009, STS made tremendous inroads in expaning this national program. STS has added schools in Tallahassee, Florida; Birmingham, Alabama; and New Orleans, Louisiana to name a few. In addition, the program was recognized by the New York, Michigan and Louisiana media. We have expanded our survivor volunteer base and continue to receive calls to expand our program in other cities. Instructors and students show great appreciation for the increased knowledge and awareness we provide.

CONFERENCE

The Ovarian Cancer National Alliance educates and raises awareness by hosting an annual Conference in Washington, DC, which offers educational opportunities through forums and lectures with renowned clinicians and researchers. More than 330 people attended the 2009 Conference, including 34 speakers. Twenty five Partner Members attended the Conference’s Leadership Summit. Some features included: • • • •

Leading medical providers and researchers presented their latest findings at the conference, including Dr. Deborah Armstrong, Dr. Robert Becker, Dr. George Coukos, Dr. Elise Kohn, Dr. William McGuire and Dr. Katrina Trivers. Partner Member Summit and Reception where Partner Members had an opportunity to network, share ideas and learn best practices in the areas of branding, social media and fundraising. Clinical Trials Forum where attendees had the opportunity to meet with representatives from ovarian cancer clinical trials that were being conducted throughout the United States, to learn about eligibility and enrollment. Survivors Celebration and Award Ceremony where leaders in the ovarian cancer community were honored.

PARTNER MEMBERS With more than forty Partner Members located across the country, the Ovarian Cancer National Alliance serves as a unifying presence in Washington, DC, amplifying the voices of the ovarian cancer community on a national level. Together we advocate for federal funding, raise awareness about the symptoms of ovarian cancer and the need for an early detection test until a cure is found. Our Partner Members share ideas, offer support and supply education in their communities, providing priceless services while leveraging our message to women whose lives have been affected by ovarian cancer. Our efforts to advance the interests of women with ovarian cancer are stronger because the commitment is shared coast to coast, through Partner Members who help carry the message at the grassroots level. Our coordinated efforts have a positive effect on the way the medical and research establishment, the media and policy leaders view and understand ovarian cancer. With our Partner Members, we are a conduit of information about breaking news, clinical trials and events and help survivors and their families learn about the progress that is being made against this disease.

AWARENESS The President, House of Representatives, Senate, states, cities and boroughs recognized September as Ovarian Cancer Awareness Month. Hundreds of grass-roots efforts across the country encouraged people to wear teal on the first Friday in September as a symbolic gesture of solidarity with this cause.

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The Ovarian Cancer National Alliance also participated in the Entertainment Industry Foundation’s Revlon Run/Walk for Women, an annual event that raises awareness and critical funds for research, treatment, counseling and outreach programs related to women’s cancers. Our annual Gala celebrating women chefs and our participation in events like Kaleidoscope and the Gynecologic Cancer Foundation’s Race to End Women’s Cancer, as well as other partnerships with women’s cancer groups, continued to raise awareness. Additionally, partnering with celebrities has helped us communicate the message about the need to be rigorous in knowing one’s body, being aware of the symptoms and asserting the need for care. The Ovarian Cancer National Alliance was fortunate to get commitments from a variety of public figures that have been affected by the disease - and who use their voices to help raise awareness. Included in the list are, actress Kathy Bates, fitness expert Jack LaLanne, and celebrity stylist Rachel Zoe. Other organizations have lent their support as well, such as music icon Janet Jackson through Cartier’s LOVE Bracelet campaign and TriStar Products.

You’re only as good as your network CONSTITUENT HELP The Ovarian Cancer National Alliance has a toll-free number, staff who answer phones and an e-mail address for questions. Daily, we answer calls and respond to e-mails from people asking for assistance with a variety of topics including how to access information about insurance coverage, how to join our mailing list to receive our monthly newsletters and how to plan a fundraiser. Our personal touch has helped people find the resources to access specialists, make decisions about insurance plans and get coverage for necessary tests and treatments.

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This month, we recommit to supporting the women who continue to battle valiantly against this malady as well as all families who are affected. By learning more about risk factors and maintaining regular physician consultations, women have their best chance of early detection of ovarian cancer. - The Presidential Proclamation

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2009

SUPPORTERS

Despite a difficult economy, it is clear that the commitment to find an early detection test and one day, a cure, remains a priority for our donors. Every day, the Board of Directors and Staff recognize our responsibility to advance the interests of women with ovarian cancer. We are grateful that, thanks to our wonderful supporters, we are able to manage our resources all to continue the fight to save women’s lives. In 2009 we had 3,000 donors. Each made a valuable contribution to our efforts and we are so grateful for all of their support.

Contributed $100,000 or more Tristar Products, Inc/Keith Mirchandani, President 

Contributed $75,000 or more Entertainment Industry Foundation  

Contributed $50,000 or more Cartier Genentech The Ambrose Monell Foundation  

Contributed $25,000 or more All Star Marketing Centers for Disease Control and Prevention Lilly USA, LLC Laurey Masterton with the Jubilee Community Church Morphotek, Inc. Ovarian Cancer Research Fund Respond2 Group Winston Wilkinson with Wachovia, Inc.

SUPPORTERS

2009

Contributed $10,000 or more Centocor Ortho Biotech Lenore M. Delanghe Digital Target Marketing, LLC Steve Doumar Five Rivers Winery Florida Department of Health Fosdick Fulfillment Corporation Fujirebio Diagnostics, Inc. GlaxoSmithKline Guthy-Renker Johnson & Johnson Lockard & Wechsler Merck Alfred Moses National Ovarian Cancer Coalition New York State Department of Health Novartis Pharmaceuticals President and Mrs. Obama Precision Therapeutics, Inc. Robert M. Stein, Jr. Webb Family Foundation Venable

Contributed $5,000 or more Judith & Ralph Abrams AstraZeneca Bureau of National Affairs, Inc. (BNA) Dana-Farber Cancer Institute Fox Chase Cancer Center Kirstein Family Foundation Benita Hofstetter  & Georg Koman Judy & Peter Kovler, The Kovler Fund Minnesota Ovarian Cancer Alliance National Student Clearinghouse Onyx Pharmaceuticals Pi Beta Phi, Kansas Alpha Chapter 425 Irving, Missy and Lindsay Rosenberg in memory of Marilyn S. Rosenberg Sylvia Ritzenberg Charitable Trust Thomas & Lisa Somermeier

FINANCIAL STEWARDSHIP

2009

Statement of Financial Position

A 501(c) (3) organization, the Ovarian Cancer National Alliance receives funding from individual donors, foundations, corporations, state and federal government and cause-marketing initiatives. We use individual solicitations, direct mail, fundraising events, grant proposals, sponsorships, product sales, and special projects to secure these funds. We remain objective in providing information to the ovarian cancer community and do not endorse any particular treatment, therapy, clinical trial or product. The Ovarian Cancer National Alliance is committed to: • • • •

Ensuring that fundraising complies with all applicable federal and state regulations, including appropriate registrations, annual filings and audits to comply with the Internal Revenue Code; Providing the public with access to its most recent financial reports and filings; Maintaining the confidentiality of donors’ information and ensuring any disclosures comply with all applicable laws; Accepting contributions from sources such as individuals, foundations and for-profit institutions while ensuring that contributors never unduly or improperly influence the positions of the Ovarian Cancer National Alliance on policy issues.

The Ovarian Cancer National Alliance preserves the public trust by taking all reasonable steps to ensure rigorous accountability in its efforts, transparency in its financial operations and careful stewardship of its donors’ funds.

Revenue Membership Dues 1% Government Grant/Contracts 4%

Registration Fees 3% Other Income 1%

2009

FINANCIAL STEWARDSHIP

As of December 31, 2009 (Unaudited)

ASSETS Current Assets Cash & Cash Equivalents $ 844,874 Accounts Receivable 165,018 Other Current Assets 54,252 Total Current Assets 1,064,144 Fixed Assets, Net 12,009 ___________ TOTAL ASSETS $1,076,153 LIABILITIES & EQUITY Current Liabilities Accounts Payable $ 6,191 Other Current Liabilities 43,402 Total Current Liabilities 49,593 Net Assets Unrestricted Net Assets: Undesignated 609,287 Board Designated 170,000 Total Unrestricted Net Assets 779,287 Temporarily Restricted Net Assets 247,273 Total Net Assets 1,026,560 TOTAL LIABILITIES & NET ASSETS $1,076,153

Statement of Activities

Year Ended December 31, 2009 (Unaudited)

Contributions 91%

Expenses General & Administrative 7%

Development 13%

Temporarily Unrestricted Restricted Total REVENUE Contributions $1,184,044 $328,673 $1,512,716 Government Grant/Contracts 66,298 - 66,298 Membership Dues 17,350 - 17,350 Registration Fees 40,300 - 40,300 Other Income 16,244 - 16,244 In Kind Contributions 10,537 - 10,537 Net assets released from restriction 230,287 (230,287) Total Revenue 1,565,060 98,386 1,663,446 EXPENSES Program Services Education & Awareness 518,367 - 518,367 Policy/Advocacy 251,748 - 251,748 Partner Member Services 20,952 - 20,952 Conference 216,403 - 216,403 Total Program Services 1,007,470 - 1,007,470 Support Services General & Administrative 84,931 - 84,931 Development 170,695 - 170,695 Total Expenses 1,263,096 - 1,263,096

CHANGE IN NET ASSETS

Programs 80%



$ 301,964

$98,386

$ 400,350

A copy of the audited financial statement & IRS 990 tax return are available through our office in Washington, DC. (See back cover for address.)

910 17th Street NW, Suite 1190 Washington, DC 20006 (202) 331-1332 www.ovariancancer.org The Ovarian Cancer National Alliance is a 501(c) (3) nonprofit organization. © 2010 Ovarian Cancer National Alliance. All rights reserved. Photos courtesy of Thad Allender and Duane Stork Photography.