World Ovarian Cancer Day: Together We’re Stronger

Each year, nearly a quarter of a million women around the world are diagnosed with ovarian cancer and the disease is responsible for 140,000 deaths annually. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared with 89% of women with breast cancer. We ask that you join us on World Ovarian Cancer Day (May 8th) in the fight against the most lethal form of gynecologic cancer.

LEARN: World Ovarian Cancer Day — May 8, 2015

On May 8, 2015, the individuals from around the world are invited to join the global movement to raise awareness about ovarian cancer. This year the theme will celebrate the natural bond women have with each other, encouraging people to send in photos of celebratory bonding moments and to sign the awareness pledge located on the website (www.ovariancancerday.org) to spread the word about ovarian cancer for the third annual World Ovarian Cancer Day (WOCD).

Dr. Maya Soetoro-Ng, President Obama’s sister, speaks out about losing her mother to ovarian cancer.

“Now in its third year, World Ovarian Cancer Day has grown globally to over 78 organizations from 25 countries,” says Elisabeth Baugh, chair of the WOCD international organizing committee and CEO of Ovarian Cancer Canada. “In celebrating the unique bonds of women, we are acknowledging the strong drive they have to share and help each other. Without women, the world would not be. Joining together, our common voice symbolizes a global support group for the 250,000 women who will be diagnosed this year with ovarian cancer.”

Celebrate the women you love, trust, and are proud to know by helping to raise awareness about ovarian cancer and view a video of celebratory images to be released globally on May 8, World Ovarian Cancer Day.

“Our outreach has demonstrated the ability of this campaign to increase awareness of the disease and to connect people internationally with the resources available to educate others,” explained members of the Steering Committee, Calaneet Balas, CEO of the Ovarian Cancer National Alliance, Annwen Jones, Target Ovarian Cancer and Alison Amos, Ovarian Cancer Australia. “This year we want to put faces to that movement – faces of women who care about and support each other.”

In 2015, not only cancer organizations, but all interested groups who care about the health of women internationally are invited to register and partner with us. The pledge also engages individuals worldwide, empowering them with information about ovarian cancer and a quick and easy way to pass on the word about the disease.

All those who sign the World Ovarian Cancer Day pledge at www.ovariancancerday.org will receive an e-card on May 8 with ovarian cancer risk and symptom information. This card is to be passed along to at least five friends, who in turn will be encouraged to pass it along to their friends.

Each year, nearly a quarter of a million women around the world are diagnosed with ovarian cancer and the disease is responsible for 140,000 deaths annually. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared with 89% of women with breast cancer. Women in developed and developing countries are similarly affected by ovarian cancer.

The recent disclosure by Angelina Jolie Pitt in a New York Times Op-Ed about prophylactic surgery to remove her fallopian tubes and ovaries because of a genetic predisposition for ovarian and breast cancer has put knowledge about your family history in the spotlight. Approximately 15%- 20% of cases of ovarian cancer are due to family history. This means having a close blood relation (mother, sister, daughter, grandmother, granddaughter, aunt or niece) on either your mother’s or your father’s side of the family who has had breast cancer before the age of 50 or ovarian cancer at any age.

In addition to sharing symptom and risk information, WOCD will also focus on prevention of ovarian cancer.

WOCD’s social media campaign includes the WOCD website (available in 4 languages: English, French, Portuguese and Spanish), Facebook, Twitter, YouTube and Pinterest. Activities in 2014 were highlighted in photos and through the pledge dissemination which reached over 15,000 people. This will continue to grow on May 8, including “lighting the world in teal” – the color that represents ovarian cancer.

World Ovarian Cancer Day has become a global movement in three short years. Uniting patient organizations globally, it has also sparked interest and involvement from healthcare professionals in countries around the world. This year, we celebrate the voice of women in making a difference as we unite and speak with one voice to raise awareness of ovarian cancer. Globally, rejoicing on our unique bond, we will ensure that no woman with ovarian cancer walks alone.

Please join us by signing the pledge form.

EDUCATE: Ovarian Cancer Facts:

Libby’s H*O*P*E* is dedicated to my 26-year old cousin, Elizabeth “Libby” Remick, who died from ovarian cancer in July 2008. Our mission is to educate ovarian cancer survivors and their families, as well as the general public, about ovarian cancer under the principle that “information is power.” The key to a significant reduction in deaths from ovarian cancer is early detection. Early detection is best achieved by having women listen to their bodies for the subtle, yet persistent, early warning signs & symptoms of the disease as described below. Together, we can raise money for a reliable early detection test, and ultimately a cure, for ovarian cancer.

Please take time to educate yourself with respect to the important ovarian cancer awareness facts provided below.

— Overview: Ovarian cancer causes more deaths than any other cancer of the female reproductive system. It is the fifth leading cancer cause of death among U.S. women.

— By the Numbers: In 2015, the American Cancer Society (ACS) estimates that there will be approximately 21,290 new ovarian cancer cases diagnosed in the U.S. ACS estimates that 14,180 U.S. women will die from the disease, or about 38 women per day. The loss of life is equivalent to 28 Boeing 747 jumbo jet crashes with no survivors every year.

— Early Warning Signs: Ovarian cancer is not a “silent” disease; it is a “subtle” disease. Recent studies indicate that some women may experience persistent, nonspecific symptoms, such as (i) bloating, (ii) pelvic or abdominal pain, (iii) difficulty eating or feeling full quickly, or (iv) urinary urgency or frequency. Women who experience such symptoms daily for more than a few weeks should seek prompt medical evaluation.

— Who’s Affected: Ovarian cancer can afflict adolescent, young adult, and mature women.

— Risk Reduction: Pregnancy, the long-term use of oral contraceptives, and tubal ligation reduce the risk of developing ovarian cancer. Recent research suggests that the most common form of ovarian cancer actually starts in the fallopian tubes. Any woman who is about to undergo gynecologic surgery may wish to discuss with her surgeon the possibility of having her fallopian tubes removed at that time.

— Importance of Family History: Women who have had breast cancer, or who have a paternal or maternal family history of breast cancer or ovarian cancer may have increased risk. Inherited mutations in BRCA1/BRCA2 genes increase risk. Women of Ashkenazi (Eastern European) Jewish ancestry are at higher risk for BRCA gene mutations. The incidence of ovarian ovarian cancer among Ashkenazi Jewish women is 1-in-40 versus 1-in-72 in the general population. Studies indicate that preventive surgery to remove the ovaries and fallopian tubes in women who possess a BRCA gene mutation decreases the risk of ovarian cancer.

— Genetic Couseling: If a woman has a family history of breast or ovarian cancer as described above, she may wish to seek genetic counselling. In fact, there is a recent shift in thinking that any woman with ovarian cancer should also seek genetic counselling as an important step for herself and other members of her family.

— Other Risk Factors: Other medical conditions associated with an increased ovarian cancer risk include pelvic inflammatory disease and Lynch syndrome. The use of hormonal replacement therapy has been shown to increase ovarian cancer risk. Tobacco smoking increases the risk of mucinous epithelial ovarian cancer. Heavier body weight may be associated with increased risk of ovarian cancer.

— Lack of a Reliable Early Screening Test: There is no reliable screening test for the detection of early stage ovarian cancer. Pelvic examination only occasionally detects ovarian cancer, generally when the disease is advanced. A Pap smear is used to detect cervical cancer, not ovarian cancer. However, the combination of a thorough pelvic exam, transvaginal ultrasound, and a blood test for the tumor marker CA125 may be offered to women who are at high risk of ovarian cancer and to women who have persistent, unexplained symptoms like those listed described above.

— Prognosis: If diagnosed at the localized stage, the 5-year ovarian cancer survival rate is 92%; however, only about 15% of all cases are detected at this stage, usually fortuitously during another medical procedure. The majority of cases (61%) are diagnosed at a distant stage, for which the 5-year survival rate is 27%.

— Survival Statistics: The 5-year and 10-year relative survival rates for all disease stages combined are only 45% and 35%, respectively. However, survival varies substantially by age; women younger than 65 are twice as likely to survive 5 years as women 65 and older (58% versus 27%).

Please help us to (i) spread the word about the early warning signs & symptoms of ovarian cancer, and (ii) raise money for ovarian cancer research. The life you save may be your own or that of a loved one.

FIGHT: The “Holy Trinity” of Major U.S. Ovarian Cancer Organizations

There are three major U.S. ovarian cancer organizations that are working to increase ovarian cancer awareness, and/or raise money to fight the disease. They are listed below. Please consider making a donation to one or more of these critically important nonprofit organizations.

• Ovarian Cancer Research Fund

The Ovarian Cancer Research Fund (OCRF) is the largest independent organization in the U.S. that is dedicated exclusively to funding ovarian cancer research– and to finding a cure. Through its three research programs, OCRF funds many of the best researchers and the most innovative projects.

Since 1998, OCRF has awarded 63 leading medical centers 195 grants for ovarian cancer research: an investment totaling over $50 million. OCRF researchers are taking on ovarian cancer from many angles:

— Developing innovative strategies for early detection;

— Discovering genetic polymorphisms that increase risk for ovarian cancer;

— Understanding the underlying genetics and molecular biology of ovarian cancer;

— Identifying new, better targets for treatment;

— Determining how to super-charge a woman’s immune response to better fight ovarian cancer; and

— Deciphering how and why ovarian cancer spreads, and how to stop it.

You can click here to make a donation to OCRF through the Libby’s H*O*P*E*’s donation page.

• Ovarian Cancer National Alliance

The Ovarian Cancer National Alliance (OCNA) is one of the foremost advocates for women with ovarian cancer in the U.S. To advance the interests of women with ovarian cancer, OCNA advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. OCNA also educates health care professionals and raises public awareness of the risks and symptoms of ovarian cancer.

To make a donation to OCNA, click here.

• National Ovarian Cancer Coalition

The mission of the National Ovarian Cancer Coalition (NOCC) is to raise awareness and promote education about ovarian cancer. NOCC is committed to improving the survival rate and quality of life for women with ovarian cancer.

Through national programs and local Chapter initiatives, the NOCC’s goal is to make more people aware of the early symptoms of ovarian cancer. In addition, the NOCC provides information to assist the newly diagnosed patient, to provide hope to survivors, and to support caregivers.

To make a donation to NOCC, click here.

INSPIRE: Everyday Heroes in the Fight Against Ovarian Cancer.

Nearly 250,000 women are diagnosed with ovarian cancer every year around the world, and the disease also affects their families and friends. Please take time to visit the WOCD website and read the inspirational stories about survivors, volunteers, and family members who are overcoming ovarian cancer, as well as the endeavors people are taking on to raise awareness about the disease.

At Libby’s H*O*P*E*, we are amazed each and every day by the inspirational ovarian cancer survivors and family members that we hear about, correspond with, or meet. The stories below represent a small sample of incredible individuals who have successfully fought the disease, as well as those who are currently fighting the disease with courage and grace. There are also stories about women who have died from ovarian cancer, but contributed to ovarian cancer awareness in a unique and special way during life. In addition, there are stories about doctors, advocates, and other inspirational individuals who are clearly making a difference in the fight against the disease.

— “Bald is Beautiful,” March 20, 2008.

— “Patty Franchi Flaherty Loses Battle to Ovarian Cancer, But Deserves a Long Standing Ovation,” August 19, 2008.

— “Oscar Winner Kathy Bates Is an Inspirational Ovarian Cancer Survivor,” February 25, 2009.

— “Rare Form of Ovarian Cancer Not Getting Inspirational 13 Yr. Old Down; You Can Help!,” February 26, 2009.

— “Meet Laurey Masterton, 20-Year Ovarian Cancer Survivor Extraordinaire,” March 20, 2009.

— “The Rock Band ‘N.E.D.’: Their Medical Skills Save Many; Their Music Could Save Thousands,” March 29, 2009.

— “A Wish To Build A Dream On,” May 3, 2009.

— “Husband’s Love For Wife Inspires A 9,000 Mile Bike Trek To Raise Money For Ovarian Cancer Awareness & Cancer Prevention,” May 14, 2009.

— “Gloria Johns Was Told ‘Ovarian Cancer Patients Don’t Live Long Enough … To Have Support Groups;’ She Proved Otherwise,” June 5, 2009.

— “Vox Populi:* How Do Your Define “Tragedy?“, January 22, 2010.

— “Smile, Open Your Eyes, Love and Go On,” July 28, 2010.

— “PBS Documentary, ‘The Whisper: The Silent Crisis of Ovarian Cancer,'” September 21, 2010.

— “Determined Teen Loses Ovarian Cancer Battle, But Her Courage Inspires An Entire Community,” December 28, 2010.

— “Mrs. Australia Quest Finalist Veronica Cristovao Is Raising Ovarian Cancer Awareness ‘Down Under'”, February 28, 2011.

— “Whither Thou Goest, I Will Go …”, July 28, 2012.

— “Crowd Funding:” Paying Medical Bills With a Little Help From Your Friends (and Strangers Too!), January 17, 2013.

___________________________

For more information on World Ovarian Cancer Day visit: www.ovariancancerday.org

Facebook: www.facebook.com/WorldOvarianCancerDay

Twitter: @OvarianCancerDY

Pinterest: @OvarianCancerDY

Each participating country is linked through the dedicated website which has been established for World Ovarian Cancer Day. To find out more about activities in each country, please contact the local organization directly through the website at http://www.ovariancancerday.org/get-involved/

SU2C Announces the Formation of a New Translational Research Ovarian Cancer “Dream Team”

Ovarian Cancer Community Joins Forces to Fight Deadliest Gynecologic Cancer. The New Stand Up To Cancer Dream Team Will Launch in 2015.

The Ovarian Cancer Research Fund, The Ovarian Cancer National Alliance, and the National Ovarian Cancer Coalition Team Up to Fund New Translational Research Ovarian Cancer “Dream Team.”

 

A groundbreaking collaboration is underway among three national ovarian cancer organizations: Ovarian Cancer Research Fund (OCRF), Ovarian Cancer National Alliance (OCNA), and National Ovarian Cancer Coalition (NOCC). In partnership with Stand Up To Cancer (SU2C), this group will fund a new Ovarian Cancer Dream Team dedicated to piloting leading-edge, ovarian cancer research that will help patients and save lives.

This partnership was announced tonight by actor Pierce Brosnan on the Stand Up To Cancer’s biennial telecast, and in recognition of National Ovarian Cancer Awareness Month. The SU2C-OCRF-OCNA-NOCC Translational Research Dream Team grant will provide funding, over a three-year period, for research associated with this insidious disease.

Ovarian cancer is the deadliest of all the gynecologic cancers. Almost 22,000 American women will be diagnosed with ovarian cancer in 2014, and more than 14,000 women will lose their lives to the disease. By collaborating to fund an Ovarian Cancer Dream Team, OCRF, OCNA and NOCC, with SU2C, will further research in the field that can lead to new treatments and improved patient outcomes.

Later this month, SU2C, through its science partner the American Association for Cancer Research (AACR), will issue a “Call for Ideas” from researchers and scientists worldwide. The selected Dream Team will be announced next spring, with research beginning in July 2015.

“Ovarian Cancer Research Fund has been the leading nonprofit funder of ovarian cancer research for years, and this new collaboration is a wonderful way to mark our 20th anniversary,” said Audra Moran, CEO of Ovarian Cancer Research Fund. “We are excited that the Dream Team grant will continue our long tradition of supporting the most innovative research in the field, while providing scientists with a vital new source of financial support.”

Calaneet Balas, CEO of the Ovarian Cancer National Alliance, said: “I am so thrilled that our three organizations are coming together to fight the disease we all care so much about. I believe the Ovarian Cancer Dream Team will be paradigm-shifting for our community, and I cannot wait to see what comes from this new initiative. We’re proud of the work the Alliance has done to secure federal research funding on behalf of all women, but the Dream Team gives us new opportunities for collaboration and innovation.”

“We are both proud and excited to join in supporting the Ovarian Cancer Dream Team, the first-ever collaboration of such efforts,” said David Barley, CEO of the National Ovarian Cancer Coalition. “We are looking forward to being instrumental in furthering ovarian cancer research. The impacts on families and communities continue to make ovarian cancer “More Than a Woman’s Disease®.” By working together we hope to make a difference in the lives of everyone we touch.”

About the Ovarian Cancer Research Fund
The Ovarian Cancer Research Fund (OCRF), founded in 1994, is the oldest and largest charity in the United States funding ovarian cancer research, and ranks third in overall ovarian cancer research funding only after the National Cancer Institute (NCI) and the U.S. Department of Defense (DOD). Its mission is to fund scientific research that leads to more effective identification, treatment, and ultimately a cure for ovarian cancer, as well as related educational and support initiatives. OCRF has invested nearly $60 million in ovarian cancer research through 217 grants to scientists at 65 leading medical centers in the United States. OCRF continues to take the lead in funding the best and most promising ovarian cancer research while supporting women and their loved ones affected by this terrible disease in our quest to end it. For more information, please visit www.ocrf.org.

About the Ovarian Cancer National Alliance
The Ovarian Cancer National Alliance is a powerful voice for everyone touched by ovarian cancer. We connect survivors, women at risk, caregivers, and health providers with the information and resources they need. We ensure that ovarian cancer is a priority for lawmakers and agencies in Washington, DC, and throughout the country. We help our community raise their voices on behalf of every life that has been affected by this disease. For more information, please visit: www.ovariancancer.org

About the National Ovarian Cancer Coalition
Since its inception in 1995, the National Ovarian Cancer Coalition (NOCC) has been committed to raising awareness, promoting education, and funding research in support of women, families, and communities touched by ovarian cancer. NOCC is well-established as an important national advocate for patients and families struggling with ovarian cancer. NOCC remains steadfast in its mission to save lives by fighting tirelessly to prevent and cure ovarian cancer, and to improve the quality of life for survivors. For more information, please visit: www.ovarian.org.

About Stand Up To Cancer
Stand Up To Cancer (SU2C) raises funds to accelerate the pace of research to get new therapies to patients quickly and save lives now. SU2C, a program of the Entertainment Industry Foundation (EIF) and a 501(c)(3) charitable organization, was established in 2008 by film and media leaders who utilize the industry’s resources to engage the public in supporting a new, collaborative model of cancer research, and to increase awareness about cancer prevention as well as progress being made in the fight against the disease. For more information, please visit: www.standup2cancer.org

World Ovarian Cancer Day: One Voice for Every Woman

Each year, nearly a quarter of a million women around the world are diagnosed with ovarian cancer and the disease is responsible for 140,000 deaths annually. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared with 89% of women with breast cancer. We ask that you join us on World Ovarian Cancer Day (May 8th) in the fight against the most lethal form of gynecologic cancer.

LEARN: World Ovarian Cancer Day — May 8, 2014

On May 8, join the global movement to raise awareness about ovarian cancer by pledging to spread the word about the most serious gynecological cancer during the second annual World Ovarian Cancer Day (WOCD). The pledge to pass on the awareness message to at least five friends will bring to life this year’s theme One Voice for Every Woman.

“The number one objective of World Ovarian Cancer Day is to increase awareness of this disease and to connect people internationally with the resources available to educate others,” says Elisabeth Baugh, chair of the WOCD international organizing committee and CEO of Ovarian Cancer Canada. “In our inaugural year, 28 cancer organizations from 18 countries participated in getting the word out, largely through social media. In 2014, we are not only inviting cancer organizations, but all interested groups internationally to register and partner with us. With our pledge, we are also involving individuals worldwide, and empowering them with information about ovarian cancer and a quick and easy way to pass on the word about the disease.”

All of those who sign the World Ovarian Cancer Day pledge at www.ovariancancerday.org will receive an e-card on May 8 with ovarian cancer risk and symptom information. This card is to be passed along to at least five friends, who in turn will be encouraged to pass it along to their friends.

Each year, nearly a quarter of a million women around the world are diagnosed with ovarian cancer and the disease is responsible for 140,000 deaths annually. Statistics show that just 45% of women with ovarian cancer are likely to survive for five years compared with 89% of women with breast cancer. Women in developed and developing countries are similarly affected by ovarian cancer. There is no test for the early detection of ovarian cancer, a disease characterized around the world by a lack of awareness of symptoms and late stage diagnosis.

WOCD’s social media campaign includes the WOCD website, Facebook, Twitter and Pinterest. To help raise awareness and show international involvement in the inaugural year, partner organizations and individuals from many countries wore teal and posed for photos in front of well-known landmarks holding signs featuring the WOCD “world embrace” logo.

These photographs were shared around the world. Other activities included public awareness events at train and subway stations, and information tables and education sessions at hospitals and cancer centers. These activities will continue to grow on May 8, 2014 along with governmental proclamations and “lighting the world in teal” – the color that represents ovarian cancer. Committee members Annwen Jones, Chief Executive of Target Ovarian Cancer, and Alison Amos, CEO, Ovarian Cancer Australia agree this is a wonderful opportunity. “World Ovarian Cancer Day is an important day for ovarian cancer organizations and communities around the world to unite and speak with one voice to raise awareness of ovarian cancer. We’re proud to be involved with this global initiative and will be passing the awareness message out among those we work with. This activity supports our vision to save lives and ensure that no woman with ovarian cancer walks alone.” “For women living with the disease and their families and friends, World Ovarian Cancer Day has tremendous meaning,” says Baugh. “Through this important day, we will continue to build momentum and a sense of solidarity in the fight against ovarian cancer. Every woman is at some risk for ovarian cancer and awareness remains our best defence.”

EDUCATE: Ovarian Cancer Facts:

Libby’s H*O*P*E* is dedicated to my 26-year old cousin, Elizabeth “Libby” Remick, who died from ovarian cancer in July 2008. Our mission is to educate ovarian cancer survivors and their families, as well as the general public, about ovarian cancer under the principle that “information is power.” The key to a significant reduction in deaths from ovarian cancer is early detection. Early detection is best achieved by having women listen to their bodies for the subtle, yet persistent, early warning signs & symptoms of the disease as described below. Together, we can raise money for a reliable early detection test, and ultimately a cure, for ovarian cancer.

Please take time to educate yourself with respect to the important ovarian cancer awareness facts provided below.

–Ovarian cancer causes more deaths than any other cancer of the female reproductive system.

–In 2014, the American Cancer Society (ACS) estimates that there will be approximately 21,980 new ovarian cancer cases diagnosed in the U.S. ACS estimates that 14,270 U.S. women will die from the disease, or about 40 women per day. The loss of life is equivalent to 28 Boeing 747 jumbo jet crashes with no survivors every year.

–Ovarian cancer is not a “silent” disease; it is a “subtle” disease. Recent studies indicate that some women may experience persistent, nonspecific symptoms, such as (i) bloating, (ii) pelvic or abdominal pain, (iii) difficulty eating or feeling full quickly, or (iv) urinary urgency or frequency. Women who experience such symptoms daily for more than a few weeks should seek prompt medical evaluation.

–Ovarian cancer can afflict adolescent, young adult, and mature women.

–Pregnancy and the long-term use of oral contraceptives reduce the risk of developing ovarian cancer.

–Women who have had breast cancer, or who have a family history of breast cancer or ovarian cancer may have increased risk. Inherited mutations in BRCA1/BRCA2 genes increase risk. Women of Ashkenazi Jewish ancestry are at higher risk for BRCA gene mutations.

–There is no reliable screening test for the detection of early stage ovarian cancer. Pelvic examination only occasionally detects ovarian cancer, generally when the disease is advanced. A Pap smear is used to detect cervical cancer, not ovarian cancer. However, the combination of a thorough pelvic exam, transvaginal ultrasound, and a blood test for the tumor marker CA125 may be offered to women who are at high risk of ovarian cancer and to women who have persistent, unexplained symptoms like those listed above.

–If diagnosed at the localized stage, the 5-year ovarian cancer survival rate is 92%; however, only about 19% of all cases are detected at this stage, usually fortuitously during another medical procedure.

–The 10-year relative survival rate for all disease stages combined is only 38%.

Please help us spread the word about the early warning signs & symptoms of ovarian cancer and raise money for ovarian cancer research. The life you save may be your own or that of a loved one.

FIGHT: The “Holy Trinity” of Major U.S. Ovarian Cancer Organizations

There are three major U.S. ovarian cancer organizations that are working to increase ovarian cancer awareness, and/or raise money to fight the disease. They are listed below. Please consider making a donation to one of these critically important nonprofit organizations.

• Ovarian Cancer Research Fund

The Ovarian Cancer Research Fund (OCRF) is the largest independent organization in the U.S. that is dedicated exclusively to funding ovarian cancer research– and to finding a cure. Through its three research programs, OCRF funds many of the best researchers and the most innovative projects.

Since 1998, OCRF has awarded 63 leading medical centers 195 grants for ovarian cancer research: an investment totaling over $50 million. OCRF researchers are taking on ovarian cancer from many angles:

— Developing innovative strategies for early detection;

— Discovering genetic polymorphisms that increase risk for ovarian cancer;

— Understanding the underlying genetics and molecular biology of ovarian cancer;

— Identifying new, better targets for treatment;

— Determining how to super-charge a woman’s immune response to better fight ovarian cancer; and

— Deciphering how and why ovarian cancer spreads, and how to stop it.

You can click here to make a donation to OCRF through the Libby’s H*O*P*E*’s donation page.

• Ovarian Cancer National Alliance

The Ovarian Cancer National Alliance (OCNA) is one of the foremost advocates for women with ovarian cancer in the U.S. To advance the interests of women with ovarian cancer, OCNA advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. OCNA also educates health care professionals and raises public awareness of the risks and symptoms of ovarian cancer.

To make a donation to OCNA, click here.

• National Ovarian Cancer Coalition

The mission of the National Ovarian Cancer Coalition (NOCC) is to raise awareness and promote education about ovarian cancer. NOCC is committed to improving the survival rate and quality of life for women with ovarian cancer.

Through national programs and local Chapter initiatives, the NOCC’s goal is to make more people aware of the early symptoms of ovarian cancer. In addition, the NOCC provides information to assist the newly diagnosed patient, to provide hope to survivors, and to support caregivers.

To make a donation to NOCC, click here.

INSPIRE: Everyday Heroes in the Fight Against Ovarian Cancer.

Nearly a quarter million women are diagnosed with ovarian cancer every year around the world, and the disease also affects their families and friends. Please take time to visit the WOCD website and read inspirational stories about survivors, volunteers, and family members who are overcoming ovarian cancer, as well as the endeavors people are taking on to raise awareness about the disease.

At Libby’s H*O*P*E*, we are amazed each and every day by the inspirational ovarian cancer survivors and family members that we hear about, correspond with, or meet. The stories below represent a small sample of incredible individuals who have successfully fought the disease, as well as those who are currently fighting the disease with courage and grace. There are also stories about women who have died from ovarian cancer, but contributed to ovarian cancer awareness in a unique and special way during life. In addition, there are stories about doctors, advocates, and other inspirational individuals who are clearly making a difference in the fight against the disease.

— “Bald is Beautiful,” March 20, 2008.

— “Patty Franchi Flaherty Loses Battle to Ovarian Cancer, But Deserves a Long Standing Ovation,” August 19, 2008.

— “Oscar Winner Kathy Bates Is an Inspirational Ovarian Cancer Survivor,” February 25, 2009.

— “Rare Form of Ovarian Cancer Not Getting Inspirational 13 Yr. Old Down; You Can Help!,” February 26, 2009.

— “Meet Laurey Masterton, 20-Year Ovarian Cancer Survivor Extraordinaire,” March 20, 2009.

— “The Rock Band ‘N.E.D.’: Their Medical Skills Save Many; Their Music Could Save Thousands,” March 29, 2009.

— “A Wish To Build A Dream On,” May 3, 2009.

— “Husband’s Love For Wife Inspires A 9,000 Mile Bike Trek To Raise Money For Ovarian Cancer Awareness & Cancer Prevention,” May 14, 2009.

— “Gloria Johns Was Told ‘Ovarian Cancer Patients Don’t Live Long Enough … To Have Support Groups;’ She Proved Otherwise,” June 5, 2009.

— “Vox Populi:* How Do Your Define “Tragedy?“, January 22, 2010.

— “Smile, Open Your Eyes, Love and Go On,” July 28, 2010.

— “PBS Documentary, ‘The Whisper: The Silent Crisis of Ovarian Cancer,'” September 21, 2010.

— “Determined Teen Loses Ovarian Cancer Battle, But Her Courage Inspires An Entire Community,” December 28, 2010.

— “Mrs. Australia Quest Finalist Veronica Cristovao Is Raising Ovarian Cancer Awareness ‘Down Under'”, February 28, 2011.

— “Whither Thou Goest, I Will Go …”, July 28, 2012.

— “Crowd Funding:” Paying Medical Bills With a Little Help From Your Friends (and Strangers Too!), January 17, 2013.

___________________________

For more information on World Ovarian Cancer Day visit: www.ovariancancerday.org

Facebook: www.facebook.com/WorldOvarianCancerDay

Twitter: @OvarianCancerDY

Pinterest: @OvarianCancerDY

Each participating country is linked through the dedicated website which has been established for World Ovarian Cancer Day. To find out more about activities in each country, please contact the local organization directly through the website at http://www.ovariancancerday.org/get-involved/

Inaugural World Ovarian Cancer Day: “World Embrace” to Learn, Educate, Fight & Inspire

May 8th, 2013, is the first World Ovarian Cancer Day. On this day, 26 ovarian cancer organizations from 17 countries around the world will unite to educate their communities about ovarian cancer and its symptoms. For women living with the disease, and their families and friends, World Ovarian Cancer Day will build a sense of solidarity in the fight against ovarian cancer.

“LEARN:” Inaugural World Ovarian Cancer Day — May 8, 2013

Ovarian cancer has the lowest survival rate of all gynecologic cancers, and is characterized around the world by a lack of awareness of symptoms and late stage diagnosis.

Today, May 8th, 2013, is the first World Ovarian Cancer Day (WOCD). On this day, ovarian cancer organizations from around the world will unite to educate their communities about ovarian cancer and its symptoms. For women living with the disease, and their families and friends, World Ovarian Cancer Day will build a sense of solidarity in the fight against the disease.

In 2009, representatives from patient organizations working in ovarian cancer around the globe came together for the first time in a two day workshop, to discuss the common issues they faced in their work.

Unlike more common cancers, there are significant challenges as the disease has been largely overlooked and underfunded to this point. Symptoms which are similar to those of less serious illnesses, the absence of an early detection test, and the resulting late diagnosis and poor outcomes means there are few survivors of the disease to become advocates. This initial meeting galvanized the community to begin thinking about what could be accomplished on a global level to begin changing this situation.

By coming together since that first meeting, the group has considered the many gaps in understanding and managing the disease, building awareness in the general public about symptoms and the importance of family history, and increasing funding for research .The idea of a Global Awareness Day for Ovarian Cancer was put forward and embraced by all participants as an important joint international action creating a powerful momentum.

A brand for World Ovarian Cancer Day, “World Embrace,” was developed and launched to the international group in March 2013 in preparation for this important day.

“EDUCATE:” Ovarian Cancer Facts:

Libby’s H*O*P*E* is dedicated to my 26-year old cousin, Elizabeth “Libby” Remick, who died from ovarian cancer in July 2008. Our mission is to educate ovarian cancer survivors and their families, as well as the general public, about ovarian cancer under the principle that “information is power.” The key to a significant reduction in deaths from ovarian cancer is early detection. Early detection is best achieved by having women listen to their bodies for the subtle, yet persistent, early warning signs & symptoms of the disease as described below. Together, we can raise money for a reliable early detection test, and ultimately a cure, for ovarian cancer.

Please take time to educate yourself with respect to the important ovarian cancer awareness facts provided below.

–Ovarian cancer causes more deaths than any other cancer of the female reproductive system.

–In 2012, the American Cancer Society (ACS) estimates that there will be approximately 22,280 new ovarian cancer cases diagnosed in the U.S. ACS estimates that 15,550 U.S. women will die from the disease, or about 43 women per day. The loss of life is equivalent to 28 Boeing 747 jumbo jet crashes with no survivors every year.

–Ovarian cancer is not a “silent” disease; it is a “subtle” disease. Recent studies indicate that some women may experience persistent, nonspecific symptoms, such as (i) bloating, (ii) pelvic or abdominal pain, (iii) difficulty eating or feeling full quickly, or (iv) urinary urgency or frequency. Women who experience such symptoms daily for more than a few weeks should seek prompt medical evaluation.

–Ovarian cancer can afflict adolescent, young adult, and mature women.

–Pregnancy and the long-term use of oral contraceptives reduce the risk of developing ovarian cancer.

–Women who have had breast cancer, or who have a family history of breast cancer or ovarian cancer may have increased risk. Inherited mutations in BRCA1/BRCA2 genes increase risk. Women of Ashkenazi Jewish ancestry are at higher risk for BRCA gene mutations.

–There is no reliable screening test for the detection of early stage ovarian cancer. Pelvic examination only occasionally detects ovarian cancer, generally when the disease is advanced. A Pap smear is used to detect cervical cancer, not ovarian cancer. However, the combination of a thorough pelvic exam, transvaginal ultrasound, and a blood test for the tumor marker CA125 may be offered to women who are at high risk of ovarian cancer and to women who have persistent, unexplained symptoms like those listed above.

–If diagnosed at the localized stage, the 5-year ovarian cancer survival rate is 92%; however, only about 19% of all cases are detected at this stage, usually fortuitously during another medical procedure.

–The 10-year relative survival rate for all disease stages combined is only 38%.

Please help us spread the word about the early warning signs & symptoms of ovarian cancer and raise money for ovarian cancer research. The life you save may be your own or that of a loved one.

“FIGHT:” The “Holy Trinity” of Major U.S. Ovarian Cancer Organizations

There are three major U.S. ovarian cancer organizations that are working to increase ovarian cancer awareness, and/or raise money to fight the disease. They are listed below. Please consider making a donation to one of these critically important nonprofit organizations.

• Ovarian Cancer Research Fund

The Ovarian Cancer Research Fund (OCRF) is the largest independent organization in the U.S. that is dedicated exclusively to funding ovarian cancer research– and to finding a cure. Through its three research programs, OCRF funds many of the best researchers and the most innovative projects.

Since 1998, OCRF has awarded 63 leading medical centers 195 grants for ovarian cancer research: an investment totaling over $50 million. OCRF researchers are taking on ovarian cancer from many angles:

— Developing innovative strategies for early detection;

— Discovering genetic polymorphisms that increase risk for ovarian cancer;

— Understanding the underlying genetics and molecular biology of ovarian cancer;

— Identifying new, better targets for treatment;

— Determining how to super-charge a woman’s immune response to better fight ovarian cancer; and

— Deciphering how and why ovarian cancer spreads, and how to stop it.

You can click here to make a donation to OCRF through the Libby’s H*O*P*E*’s donation page.

• Ovarian Cancer National Alliance

The Ovarian Cancer National Alliance (OCNA) is one of the foremost advocates for women with ovarian cancer in the U.S. To advance the interests of women with ovarian cancer, OCNA advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. OCNA also educates health care professionals and raises public awareness of the risks and symptoms of ovarian cancer.

To make a donation to OCNA, click here.

• National Ovarian Cancer Coalition

The mission of the National Ovarian Cancer Coalition (NOCC) is to raise awareness and promote education about ovarian cancer. NOCC is committed to improving the survival rate and quality of life for women with ovarian cancer.

Through national programs and local Chapter initiatives, the NOCC’s goal is to make more people aware of the early symptoms of ovarian cancer. In addition, the NOCC provides information to assist the newly diagnosed patient, to provide hope to survivors, and to support caregivers.

To make a donation to NOCC, click here.

“INSPIRE:” Everyday Heroes in the Fight Against Ovarian Cancer.

Nearly a quarter million women are diagnosed with ovarian cancer every year around the world, and the disease also affects their families and friends. Please take time to visit the WOCD website and read inspirational stories about survivors, volunteers, and family members who are overcoming ovarian cancer, as well as the endeavors people are taking on to raise awareness about the disease.

At Libby’s H*O*P*E*, we are amazed each and every day by the inspirational ovarian cancer survivors and family members that we hear about, correspond with, or meet. The stories below represent a small sample of incredible individuals who have successfully fought the disease, as well as those who are currently fighting the disease with courage and grace. There are also stories about women who have died from ovarian cancer, but contributed to ovarian cancer awareness in a unique and special way during life. In addition, there are stories about doctors, advocates, and other inspirational individuals who are clearly making a difference in the fight against the disease.

— “Bald is Beautiful,” March 20, 2008.

— “Patty Franchi Flaherty Loses Battle to Ovarian Cancer, But Deserves a Long Standing Ovation,” August 19, 2008.

— “Oscar Winner Kathy Bates Is an Inspirational Ovarian Cancer Survivor,” February 25, 2009.

— “Rare Form of Ovarian Cancer Not Getting Inspirational 13 Yr. Old Down; You Can Help!,” February 26, 2009.

— “Meet Laurey Masterton, 20-Year Ovarian Cancer Survivor Extraordinaire,” March 20, 2009.

— “The Rock Band ‘N.E.D.’: Their Medical Skills Save Many; Their Music Could Save Thousands,” March 29, 2009.

— “A Wish To Build A Dream On,” May 3, 2009.

— “Husband’s Love For Wife Inspires A 9,000 Mile Bike Trek To Raise Money For Ovarian Cancer Awareness & Cancer Prevention,” May 14, 2009.

— “Gloria Johns Was Told ‘Ovarian Cancer Patients Don’t Live Long Enough … To Have Support Groups;’ She Proved Otherwise,” June 5, 2009.

— “Vox Populi:* How Do Your Define “Tragedy?“, January 22, 2010.

— “Smile, Open Your Eyes, Love and Go On,” July 28, 2010.

— “PBS Documentary, ‘The Whisper: The Silent Crisis of Ovarian Cancer,'” September 21, 2010.

— “Determined Teen Loses Ovarian Cancer Battle, But Her Courage Inspires An Entire Community,” December 28, 2010.

— “Mrs. Australia Quest Finalist Veronica Cristovao Is Raising Ovarian Cancer Awareness ‘Down Under'”, February 28, 2011.

— “Whither Thou Goest, I Will Go …”, July 28, 2012.

— “Crowd Funding:” Paying Medical Bills With a Little Help From Your Friends (and Strangers Too!), January 17, 2013.

___________________________

For more information on World Ovarian Cancer Day visit: www.ovariancancerday.org

Facebook: www.facebook.com/WorldOvarianCancerDay

Twitter: @OvarianCancerDY

Pinterest: @OvarianCancerDY

Each participating country is linked through the dedicated website which has been established for World Ovarian Cancer Day. To find out more about activities in each country, please contact the local organization directly through the website at http://www.ovariancancerday.org/get-involved/

FDA Revokes Approval of Avastin Use For Metastatic Breast Cancer; Major U.S. Ovarian Cancer Advocacy Organization Concerned

Today, the U.S. Food and Drug Administration (FDA) Commissioner Hamburg revoked approval of Avastin for treatment of metastatic breast cancer in the U.S. The decision does not impact Avastin’s availability for its approved uses for other cancer types in the U.S. A major U.S. ovarian cancer advocacy organization is concerned that the FDA decision will make it more difficult for ovarian cancer patients to gain access to Avastin.

FDA Revocation of Avastin Approval For Metastatic Breast Cancer

FDA Commissioner Margaret A. Hamburg, M.D., said today she is revoking the agency’s approval of the breast cancer indication for Avastin® (bevacizumab) after concluding that the drug has not been shown to be safe and effective for that use.

Avastin will still remain on the market as an approved treatment for certain types of colon, lung, kidney and brain cancer (glioblastoma multiforme).

“This was a difficult decision. FDA recognizes how hard it is for patients and their families to cope with metastatic breast cancer and how great a need there is for more effective treatments. But patients must have confidence that the drugs they take are both safe and effective for their intended use,” Dr. Hamburg said. “After reviewing the available studies it is clear that women who take Avastin for metastatic breast cancer risk potentially life-threatening side effects without proof that the use of Avastin will provide a benefit, in terms of delay in tumor growth, that would justify those risks. Nor is there evidence that use of Avastin will either help them live longer or improve their quality of life.”

Avastin’s risks include severe high blood pressure; bleeding and hemorrhaging; heart attack or heart failure; and the development of perforations in different parts of the body such as the nose, stomach, and intestines.

Today’s decision, outlined in Dr. Hamburg’s 69-page opinion, involves Avastin used in combination with the cancer drug paclitaxel (Taxol) for those patients who have not been treated with chemotherapy for their form of metastatic breast cancer known as “HER-2 negative.” This indication must now be removed from Avastin’s product labeling.

Dr. Hamburg’s decision is based on an extensive record, which includes thousands of pages submitted to a public docket, data from several clinical trials, and the record from a two-day hearing held in June, 2011.

Avastin was approved for metastatic breast cancer in February 2008 under the FDA’s accelerated approval program, which allows a drug to be approved based on data that are not sufficiently complete to permit full approval. The accelerated approval program provides earlier patient access to promising new drugs to treat serious or life-threatening conditions while confirmatory clinical trials are conducted. If the clinical trials do not justify the continued approval of the drug or a specific drug indication, the agency may revoke its approval. In this case, the accelerated approval was based on promising results from one study that suggested that the drug could provide a meaningful increase in the amount of time from when treatment is started until the tumor grows or the death of the patient.

After the accelerated approval of Avastin for breast cancer, the drug’s sponsor, Genentech (a member of the Roche Group) completed two additional clinical trials and submitted the data from those studies to the FDA. These data showed only a small effect on tumor growth without evidence that patients lived any longer or had a better quality of life compared to taking standard chemotherapy alone – not enough to outweigh the risk of taking the drug.

The FDA’s Center for Drug Evaluation and Research (CDER), which is responsible for the approval of this drug, ultimately concluded that the results of these additional studies did not justify continued approval and notified Genentech that it was proposing to withdraw approval of the indication.

Genentech did not agree with CDER’s evaluation of the data and, following the procedures set out in FDA regulations, requested a hearing on CDER’s withdrawal proposal, with a decision to be made by the FDA Commissioner. That two-day hearing, which took place June 28-29, 2011, included recommendations from the FDA’s Oncologic Drugs Advisory Committee (ODAC), voting 6-0 in favor of withdrawing approval of Avastin’s breast cancer indication. After the hearing, the public docket remained open until August 4, 2011. In an earlier meeting of the ODAC, that committee had voted 12-1 in favor of the removal of the breast cancer indication from the Avastin label.

“FDA is committed to working with sponsors to bring promising cancer drugs to market as quickly as possible using tools like accelerated approval,” Dr. Hamburg said. “I encourage Genentech to consider additional studies to identify if there are select subgroups of women suffering from breast cancer who might benefit from this drug.”

Genentech Response

In a press release issued earlier today, Genentech’s Hal Barron, M.D., chief medical officer and head, Global Product Development, stated:

“We are disappointed with the outcome. We remain committed to the many women with this incurable disease and will continue to provide help through our patient support programs to those who may be facing obstacles to receiving their treatment in the United States. Despite today’s action, we will start a new Phase III study of Avastin in combination with paclitaxel in previously untreated metastatic breast cancer and will evaluate a potential biomarker that may help identify which people might derive a more substantial benefit from Avastin.”

Genentech emphasizes the following points in its press release:

• The FDA Commissioner revoked approval of Avastin for treatment of metastatic breast cancer in the U.S.

• The FDA’s action concludes its review of Avastin’s use for metastatic breast cancer.

• The FDA decision does not impact Avastin’s approved uses for other cancer types in the U.S. or other countries.

• The FDA decision does not impact the approval of Avastin for metastatic breast cancer in more than 80 foreign countries.

• Roche will initiate a new clinical trial of Avastin plus paclitaxel in metastatic breast cancer.

• Genentech will issue a letter to healthcare providers and will also provide them with a letter to distribute to their patients. Both letters will be made available on Genentech’s website.

• Patients with questions or concerns about insurance coverage, or doctors with questions about reimbursement, can call Genentech’s Access Solutions Group at (866)-4- ACCESS.

• Doctors with questions about Avastin can call Genentech’s Medical Communications group at (800) 821-8590.

• The FDA’s action does not impact ongoing clinical trials with Avastin in breast cancer. For more information, please call Genentech’s Trial Information Support Line at (888) 662-6728 or visit clinicaltrials.gov.

Major U.S. Ovarian Cancer Advocacy Organization Concerned About Future Impact of FDA Decision

Karen Orloff Kaplan, MSW, MPH, ScD, Chief Executive Officer, Ovarian Cancer National Alliance

Karen Orloff Kaplan, MSW, MPH, ScD, the Chief Executive Officer for the Ovarian Cancer National Alliance (OCNA), expressed concern that the removal of metastatic breast cancer from the Avastin label could negatively affect women with ovarian cancer, for whom the drug is used “off-label.”  OCNA is one of the most influential advocates for women with ovarian cancer in the United States.

Dr. Kaplan stated:

“Results from three Phase III clinical studies show that Avastin is beneficial for some women with ovarian cancer. We are deeply concerned that the Food and Drug Administration’s decision regarding metastatic breast cancer will make it difficult for women with ovarian cancer to access Avastin, and that patients could be denied insurance coverage for this treatment. The Ovarian Cancer National Alliance will continue our work to ensure that drugs that are useful and medically appropriate are available to women with this disease.”

In the FDA report accompanying her decision, Commissioner Hamburg cited a lack of evidence that Avastin improved overall survival for women with metastatic breast cancer in its decision. “Given how difficult it is to measure overall survival in ovarian cancer clinical trials, we are concerned that today’s ruling may set an unfortunate precedent,” said Dr. Kaplan.

Currently, various national cancer treatment guidelines, such as the National Comprehensive Cancer Network (NCCN) Compendium™, include Avastin as a treatment for ovarian cancer. Despite that fact, the FDA’s decision could prompt a reexamination of industry treatment guidelines by various groups, including the NCCN. The NCCN  is a nonprofit alliance which consists of 21 leading U.S. cancer centers.

Specifically, OCNA is concerned that the FDA Avastin label change, mandated by today’s FDA decision, will lead to restrictions by third party payers, including the U.S. Medicare federal insurance program, who generally reimburse for Avastin when a woman’s cancer has returned. OCNA’s concern may be warranted because Reuters reported earlier today that some healthcare insurers have already started pulling back on Avastin reimbursement coverage for breast cancer.

As of now, according to Reuters, Medicare will continue to pay for Avastin used in the treatment of breast cancer, despite  the FDA’s revocation decision. “Medicare will continue to cover Avastin,” said Don McLeod, a spokesman for the Centers for Medicare and Medicaid Services (CMS). “CMS will monitor the issue and evaluate coverage options as a result of action by the FDA but has no immediate plans to change coverage policies.” The CMS statement may mitigate concerns that patients using the drug would lose critical drug reimbursement insurance coverage in the future.

Sources:

• FDA Commissioner announces Avastin decision — Drug not shown to be safe and effective in breast cancer patients, News Release, United States Food & Drug Administration, November 18, 2011.

• FDA Commissioner Announces Final Decision on Avastin for Metastatic Breast Cancer, Press Release, Genentech, November 18, 2011.

• Ovarian Cancer Advocates Troubled by FDA Decision on Avastin and Breast Cancer, By Staff Editor, HealthNewsDigest.com, November 18, 2011.

• FDA Revokes Approval of Avastin for Breast Cancer, Reuters (U.S. edition), November 18, 2011.

• Medicare to Still Cover Avastin for Breast Cancer, Reuters (U.S. edition), November 18, 2011.

Addtional Information:

• Proposal to Withdraw Approval for the Breast Cancer Indication For Avastin (Bevacizumab) — Decision of the Commissioner, Docket No. FDA 2010-N-0621, U.S. Food & Drug Administration, Department of Health and Human Services, November 18, 2011. [Adobe Reader PDF doc.]

• FDA Commissioner’s Opening Statement from Media Call, U.S. Food & Drug Administration, Department of Health and Human Services, November 18, 2011.

• Questions and Answers: Removing Metastatic Breast Cancer as an Indication from Avastin’s Product Labeling, U.S. Food & Drug Administration, Department of Health and Human Services, November 18, 2011.

• Hearing on Proposal to Withdraw Approval for the Breast Cancer Indication for Bevacizumab (Avastin), U.S. Food & Drug Administration, Department of Health and Human Services, November 18, 2011.

Call To Action! Protect & Expand U.S. Federal Ovarian Cancer Research Funding

Do you live in AL, CA, HI, IL, IA, KS, KY, MD, MI, MO, NH, ND, PA, TX, UT, VT, WA or WI? If so, one of your Senators sits on the U.S. Senate Defense Appropriations subcommittee that determines how much funding is given to the Department of Defense Ovarian Cancer Research Program. Ask your Senator to increase funding for this critical ovarian cancer research program. Click on the hyperlink below to obtain step-by-step instructions provided by the Ovarian Cancer National Alliance. It’s so important, and it’s so easy!

Woody Allen once said that 80% of success in life is just showing up. When it comes to U.S. federal funding of ovarian cancer research on Capitol Hill, decision are definitely made by those who show up.

Do you live in Alabama, California, Hawaii, Illinois, Indiana, Kansas, Kentucky, Maryland, Michigan, Mississippi, Missouri, New Hampshire, North Dakota, Pennsylvania, Texas, Utah, Vermont, Washington, or Wisconsin?

If so, you live in a state represented by a Senator who sits on the U.S. Senate Defense Appropriations subcommittee, the subcommittee that controls spending levels for the Department of Defense Ovarian Cancer Research Program (DoD OCRP). This critical program is the only dedicated federal budget line item that funds ovarian cancer research. Last year, funding for the program was cut. We need your Senator to support this program.

Please call your Senator’s office and request that he or she talk to the Chairman or Vice-Chair of the Defense Appropriations Subcommittee to express their support of a minimum of $30 million for the DoD OCRP in 2011.

The Ovarian Cancer National Alliance makes taking this action simple! CLICK HERE , enter your zip code, and you will receive step-by-step instructions.

If your Senator gets enough calls, he or she will believe that this is an important issue and will be more inclined to have this conversation with the Chairman or Vice Chairman. Both the Chairman and the Vice-Chair play a key role in determining how much money the DoD OCRP receives in order to carry out ovarian cancer research, so it is important that they hear from their Senate colleagues.

As seen in the chart below, ovarian cancer research funded by the U.S. federal government makes up the majority of all ovarian cancer research conducted in the U.S. We need to protect and expand this funding so we can get an early detection test and more effective treatments.

Source: Ovarian Cancer National Alliance

The more calls we make, the bigger impact we will make. Get your friends and family in your state involved in the mission to get increased U.S. federal funding for ovarian cancer research by asking them to call too!

Please place your calls by September 10th!

Source:  Call to action! Protect and expand ovarian cancer research funding! Action Alert, Ovarian Cancer National Alliance.

“Decisions Are Made By Those Who Show Up”*

Responding to a threat of a funding reduction to the Department of Defense’s Ovarian Cancer Research Program, during the last week of October the Ovarian Cancer National Alliance urged advocates to contact their Members of Congress to appeal to the Appropriations Defense Subcommittee to increase funding for the research program. As a result of the Ovarian Cancer National Alliance’s advocacy efforts, 14 Senators and 77 Representatives showed their opposition to the funding cut by signing a Dear Colleague letter sent to the Subcommittee Tuesday, November 3, 2009. …

Advocates Work To Prevent Slash In Ovarian Cancer Research Funding

Responding to a threat of a funding reduction to the Department of Defense’s Ovarian Cancer Research Program, during the last week of October the Ovarian Cancer National Alliance (OCNA) urged advocates to contact their Members of Congress to appeal to the Appropriations Defense Subcommittee to increase funding for the research program.

Advocates lobbying on Capitol Hill for increased funds for ovarian cancer research. (Photo: Ovarian Cancer National Alliance)

As a result of OCNA’s advocacy efforts, 14 Senators and 77 Representatives showed their opposition to the funding cut by signing a Dear Colleague letter sent to the Subcommittee Tuesday, November 3, 2009.

The Dear Colleague letter, written by Senator Robert Menendez (D-NJ) and Congresswoman Rosa DeLauro (D-CT), requested that the Subcommittee allocate the $25 million set forth in the U.S. House of Representatives‘ version of the Defense bill, and not the $10 million outlined in the U.S. Senate version of the bill. The Senate funding level represented a 50 percent reduction from the $20 million appropriated in fiscal year (FY) 2009.

The date of the conference subcommittee meeting has yet to be announced.

Established in 1997, the Department of Defense’s Ovarian Cancer Research Program has received $10 million in funding annually from FY 1998 until FY 2008. However, for FY 2009, the program’s funding was doubled to $20 million. The Ovarian Cancer Research Program works to eliminate ovarian cancer by conducting innovative, multidisciplinary research on early detection, screening and treatment of ovarian cancer.

To read the full text of the letter and see if your elected officials signed, please click here.

The Ovarian Cancer Action Network periodically sends out action alerts to notify advocates of pressing issues that need constituent support. To sign up, please click here.

About the Ovarian Cancer National Alliance

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

• Adequate and sustained funding for ovarian cancer research and awareness programs, and

• Legislation that improves quality of life and access to care for ovarian cancer patients.

Since 1997, when OCNA was founded, death rates from ovarian cancer have not significantly changed. However, OCNA has worked to increase funding for ovarian cancer research, with the goal that this funding will support breakthroughs to help detect ovarian cancer early, treat it more thoroughly, and allow women with ovarian cancer to survive, and thrive.

OCNA has worked to ensure that (i) necessary treatments are covered by Medicare, (ii) drugs and tests on the market are safe and effective, and (iii) federal policy makers are aware of the importance of the ovarian cancer community.

Join OCNA to fight for women with ovarian cancer, and policies that help support them and their families.

Source: Advocates Work To Prevent Slash In Ovarian Cancer Research Funding, News Update, Ovarian Cancer National Alliance, November 11, 2009.

*Title Quote:  Fictional U.S. President Josiah Edward Bartlet, What Kind of Day Has It Been Episode, The West Wing, created by Aaron Sorkin, originally aired May 17, 2000 [Sorkin attributes his teleplay quote to Woody Allen (“80% of success in life is just showing up”)].

Meet Laurey Masterton, 20-Year Ovarian Cancer Survivor Extraordinaire

To call Laurey Masterton an “overachiever” is akin to calling Lance Armstrong a “decent” bike rider. …On March 6, 2009, Laurey dipped her rear bicycle tire into the Pacific Ocean (San Diego, CA), and started a 58-day, 3100-mile trek that will culminate in the dipping of her front bicycle tire into the Atlantic Ocean (St. Augustine, FL) on or about April 30th. … The purpose of her bike trip is to raise awareness about ovarian cancer. …

To call Laurey Masterton an “overachiever” is akin to calling Lance Armstrong a “decent” bike rider.   A few of Laurey’s amazing talents and achievements (past & present) include the following:

Laurey Masterton, 20-Year Ovarian Cancer Survivor, Bikes Across America to Raise Awareness About the Early Warning Signs & Symptoms of Ovarian Cancer (Photo Source: Ovarian Cancer National Alliance)

• Graduate from the University of New Hampshire;
• Outward Bound Instructor who co-created and instructed the first Outward Bound courses for cancer survivors at The North Carolina Outward Bound School;
• Intern for Nora Pouillion, the creator of the first 100 percent certified organic restaurant in the U.S.;
• Founder of Laurey’s Catering & Gourmet to Go, a very successful catering business and shop for “gourmet comfort food;”
• Author of Elsie’s Biscuits:Simple Stories of Me, My Mother, and Food, a “culinary memoir-with recipes” in which she tells about growing up in the golden light of a small inn, losing her parents as a child, and then finding her way back to them through food and stories;
  
• In 1999, Laurey was awarded the Small Business Leader of the Year for both Asheville, North Carolina and the state of North Carolina;
• In 2001, Laurey was the recipient of  The Athena Award, which promotes women’s leadership and honors outstanding leaders;
• Board Chair of  the Asheville Area Chamber of Commerce;
• Board Member of the Appalachian Sustainable Agriculture Project;
• Participant in local farm-to-table initiatives, with a particular interest in helping children experience gardening, cooking and the eating of “real food;”
• Glassblowing student, who collects sea urchins, antique chafing dishes, and old Clementine boxes;
• Italian speaking leader of guided culinary tours to the Tuscany region of Italy and the Provence region of France;
• Active long-distance bike rider and beekeeper;
• Resident of Asheville, North Carolina, where she lives with her partner Chris and her dog Tye;
• Follower of the motto “don’t postpone joy;” and
• 20-year survivor of ovarian cancer, one of the deadliest cancers affecting women today.

Yup, I “buried the lead” as they say in journalism.  Laurey is a 20-year ovarian cancer survivor who fully recognizes and appreciates her good fortune.  As you probably guessed by now, the appreciation of good fortune is simply not enough for Laurey.   On March 6, 2009, Laurey dipped her rear bicycle tire into the Pacific Ocean (San Diego, CA), and started a 58-day, 3100-mile trek that will culminate in the dipping of her front bicycle tire into the Atlantic Ocean (St. Augustine, FL) on or about April 30th. The purpose of her bike trip is to raise awareness about the warning signs and symptoms of ovarian cancer and the dire need for early detection.  In an interview with the Ovarian Cancer National Alliance (OCNA), Laurey said, “Being a 20-year ovarian cancer survivor is a special victory because sadly most of its victims don’t reach this milestone. I’m one of the lucky ones because I was able to feel symptoms early on and was diagnosed in Stage I. I was in touch with my body, I knew something was wrong, I was persistent with the doctors and it saved my life. Early detection and awareness of ovarian cancer is the message that I want my bike ride to convey.”

Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:

• Bloating

• Pelvic or abdominal pain

• Difficulty eating or feeling full quickly

• Urinary symptoms (urgency or frequency)

As in Laurey’s case, women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that early stage ovarian cancer can produce these symptoms. Women who have these symptoms daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation can lead to detection at the earliest possible stage of the disease which is associated with an improved prognosis.  Additional symptoms can include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities.

The ovarian cancer facts and figures published by the American Cancer Society in 2008 note the following:

• Ovarian cancer can afflict adolescent, young adult, and mature women, although the risk of disease increases with age and peaks in the late 70s. Pregnancy and the long-term use of oral contraceptives reduce the risk of developing ovarian cancer.

• There is no reliable screening test for the detection of early stage ovarian cancer. Pelvic examination only occasionally detects ovarian cancer, generally when the disease is advanced.  However, the combination of a thorough pelvic exam, transvaginal ultrasound, and a blood test for the tumor marker CA125 can be offered to women who are at high risk of ovarian cancer and to women who have persistent, unexplained symptoms like those listed above.

• If diagnosed at the localized stage, the 5-year ovarian cancer survival rate is 92%; however, only about 19% of all cases are detected at this stage, usually fortuitously during another medical procedure.

• For women with regional and distant metastatic disease, the 5-year ovarian cancer survival rates are 71% and 30%, respectively. The 10-year relative survival rate for all stages combined is 38%.

• Women who have had breast cancer, or who have a family history of breast cancer or ovarian cancer may have increased risk. Inherited mutations in BRCA1 or BRCA2 genes increase risk. Women of Ashkenazi (European) Jewish ancestry are at greater risk for inherited BRCA gene mutations.  Another genetic syndrome, hereditary nonpolyposis colon cancer (also known as “Lynch syndrome”), has also been associated with endometrial and ovarian cancer.

• Ovarian cancer incidence rates are highest in Western industrialized countries.

• Ovarian cancer accounts for about 3% of all cancers among women and ranks #2 among gynecologic cancers.

• An estimated 21,650 new ovarian cancer cases were diagnosed in the U.S.

• An estimated 15,520 ovarian cancer deaths occurred.

• Ovarian cancer causes more deaths than any other cancer of the female reproductive system.

Prior to starting her trip, Laurey Masterton raised a portion of her $50,000 goal amount that will be donated to (i) OCNA, in support of its work on research, education, and awareness essential to the fight against ovarian cancer, and (ii) the Women Chefs and Restaurateurs (WCR), an organization that promotes and enhances the education, advancement and connection of women in the culinary industry. In turn, the OCNA and WCR are partnering with Laurey in her efforts to raise ovarian cancer awareness.  “Laurey is an inspiration to women everywhere to never give up and always to have hope no matter how big the obstacle,” says Karen Orloff Kaplan, CEO of OCNA. “We are delighted to support Laurey throughout her bike ride and help her reach her goals in bringing more attention to ovarian cancer.”

Laurey is journaling online in “real time” about various aspects of her ongoing bike trip at www.laureybikes.blogspot.com. On Saturday, March 14th, Laurey stopped at Apache Junction, Arizona to chat with several ovarian cancer survivors. In one of Laurey’s most touching journal entries to date, entitled A morning to chat, Laurey writes:

(Photo Source: Laurey Bikes at http://www.laureybikes.blogspot.com)

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These sweet lovelies came to see me off this morning. FIRST thing! Ovarian cancer survivors (the woman on my left is a 38 year survivor!) and supporters, they arrived, armed with teal feather boas and a video camera and good questions. The sun rose over those fragrant eucalyptus trees and we talked about riding and surviving and persisting in the face of chemotherapy or miles and miles of uphill, bumpy roads.

Before I left Asheville I had a Reiki session with a friend and told her that I was not sure I was doing the right thing by leaving my business and my home and my friends and my life to go gallivanting around on my red Trek. She said I would find signs to tell me I WAS doing the right thing. She said, “Your spirit guides will tell you. They especially like to show themselves in the form of pennies and feathers.”

Ha!

Here they are.

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I encourage everyone to check out Laurey’s Google Map below, which sets forth her anticipated travel route and stops.  As of this writing, Laurey was leaving Lordsburg, New Mexico, so please visit Laurey’s blog to learn how you can support her during her cross-country bike ride.

If I were a betting man, I would say that there is no doubt that Laurey will complete her cross country trek, while educating thousands of women about the warning signs and symptoms of ovarian cancer, and the need for early detection. Throughout her entire life, Laurey did not allow difficult life circumstances and past achievements to define her. Nothing has changed. She always moves forward, living by the motto “don’t postpone joy.”  Laurey not only represents a strong role model for ovarian cancer survivors, she is an inspiring and passionate role model for anyone with a heartbeat.

Babe Ruth, the legendary baseball player, once said, “It’s hard to beat a person who refuses to give up.”  A word to the wise:  Never bet against Laurey because the word “quit” is not in her vocabulary!

In the video below, TV Personality and Chef Sara Moulton conducts an intimate interview with Laurey Masterton regarding her cross country bike ride to raise awareness about the early warnings signs and symptoms of ovarian cancer.

TV Personality & Chef Sara Moulton Interviews Laurey Masterton

About the Ovarian Cancer National Alliance

The Ovarian Cancer National Alliance (OCNA) is the nation’s vision and voice for ovarian cancer issues. The OCNA, a 501(c)(3) nonprofit organization, leads the national initiative to conquer ovarian cancer by uniting individuals and local, state and national organizations in a consolidated movement to advance ovarian cancer research, improve health care practice and find an effective screening test and a cure for the disease. To learn more about the OCNA, visit its website at www.ovariancancer.org.

About the Women Chefs and Restaurateurs

The mission of  Women Chefs & Restaurateurs is to promote and enhance the education, advancement and connection of women in the culinary industry. Formed in 1993 by eight of the nation’s top women chefs and restaurateurs, WCR has grown to a membership of over 2,000 members, offering a variety of networking, professional and support services. To learn about WCR, visit its website at www.womenchefs.org.
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Primary Source:  20-Year Ovarian Cancer Survivor Celebrates Golden Birthday – Chef Laurey Masterton Bikes 3,098 Miles Across US to Raise Awareness About Ovarian Cancer, Press Release, Ovarian Cancer National Alliance, March 4, 2009.  Libby’s H*O*P*E*™ would like to extend a special thank you to Laurey Masterton and the Ovarian Cancer National Alliance for allowing us to feature Laurey’s story along with her photographs and google map.

Oscar Winner Kathy Bates Is an Inspirational Ovarian Cancer Survivor

When you think of Kathy Bates, you recall immediately her portrayal of “Annie Wilkes” in the movie Misery.  In Misery, Kathy Bates, as Annie, holds her favorite author (played by James Caan) hostage.   The role of Annie Wilkes earned Kathy Bates an Oscar for “Best Actress.” Her role as the legendary “Unsinkable Molly Brown” in the movie Titanic is also unforgettable.  More recently, she re-teamed with her Titanic co-stars Leonardo DiCaprio and Kate Winslet in the movie Revolutionary Road, which is based upon Richard Yates‘ critically acclaimed novel by the same name.  Throughout her lengendary career, Kathy Bates has been a talented actress, television director, singer, producer, and composer.  Kathy can now add ovarian cancer spokesperson and advocate to her ongoing list of talented roles.

Bates appeared on the TODAY show on January 9th, 2009, to discuss her role in the film Revolutionary Road and her experience with ovarian cancer. The Kathy Bates interview video is provided below through a hyperlink.

Kathy Bates Interview on the NBC TODAY show

In September 2008, and for the first time publicly, Kathy Bates shared the story of her personal fight with ovarian cancer with the Ovarian Cancer National Alliance (OCNA) .  With respect to her OCNA interview, Bates said: “As an ovarian cancer survivor, I have decided to join forces with the Ovarian Cancer National Alliance by sharing my story and helping educate women about one of the deadliest cancers affecting women today.”  The interview was very personal and in-depth,  and Bates shared insights about how she was diagnosed with the disease.  The video of the Kathy Bates interview with OCNA is provided below.

Kathy Bates Interview with OCNA

As an ovarian cancer advocate, Ms. Bates also filmed a 30-second TV Public Service Announcement (PSA) about ovarian cancer and its symptoms.  Bates’ ovarian cancer PSA was launched in New York City taxi cabs during September 2008, National Ovarian Cancer Awareness month, and continues to run on TV networks nationwide.  In response to Kathy Bates’ willingness to speak out about ovarian cancer, Karen Orloff Kaplan, Chief Executive Officer of OCNA, said: “OCNA recognizes the personal strength it took Kathy to talk publicly about her run-in with cancer.  We appreciate her willingness to share her story and be an advocate for the organization in its mission to educate women across the country about ovarian cancer.”  The ovarian cancer PSA video featuring Kathy Bates is provided below.

Kathy Bates Ovarian Cancer PSA

Source:  Academy Award Winning Actress Kathy Bates Opens Up about her Experience with Ovarian Cancer, Articles, Ovarian Cancer National Alliance.

“Scars Are Just Tattoos With Better Stories”

This week H*O*P*E*™ highlights and honors Katie Fetzer. Katie is a 25-year old kindergartner teacher and an inspirational ovarian cancer survivor. A nagging pain that never went away and only seemed to grow in intensity prompted Fetzer to make a visit to her doctor in 2006. An ultrasound revealed a large mass on her left ovary, so she followed up with her gynecologist. Her gynecologist referred the young woman, who hadn’t even had the chance to begin her career as a teacher yet, to a gynecologic oncologist.

“He looked me right in the eye and said, ‘I will take care of this for you,'” Fetzer said of her oncologist. “And then,” she added, “I could breathe again.” Subsequent to the initial diagnosis, Fetzer had three surgeries-one to remove her left ovary as well as lymph nodes in her abdominal area; another to remove lymph nodes in her neck; and the last, which was in January 2007, to remove her remaining ovary. The nodes were removed because some of the cancerous cells invaded her lymphatic system. Fetzer also undergoes CT scans every six months as follow-up. She has not received radiation or chemotherapy because these types of treatments work best on fast-growing cells, and her cancer cells are slow-growing.

Katie’s gynecological oncologist went above and beyond when he helped her find a way to harvest some of her eggs before her ovaries were removed. The eggs were extracted and frozen right after Christmas 2006, before her second ovary was removed. “I call it my Christmas miracle,” she said, adding “It was a no-brainer for me to do this. I’ve always wanted to be a mom and to have that taken away from me was terrifying. … After the success of the egg harvesting, I feel so calm. I don’t have to worry.”

Now, Katie lives her life moment by moment, but certainly to its fullest. “It’s a sticky subject because these cells are still in your body and I think it’s a matter of if and when something triggers them,” she said. “… [O]ne of the biggest changes I’ve made is to not sweat the small stuff. … Now that I have basically a new shot – a new chance – I try to prioritize on what’s really important. Like, should I worry about tomorrow? Well, no, because tomorrow is not here.”

Fetzer is making a difference by speaking and educating others about ovarian cancer. Always a teacher at heart, Katie speaks to medical students and medical professionals in training as part of an educational ovarian cancer awareness program sponsored by the Ovarian Cancer National Alliance (OCNA). Through OCNA’s innovative educational program, Survivors Teaching Students: Saving Women’s Lives(SM), future healthcare professionals – physicians, nurse practitioners, nurses and physician assistants – increase their understanding of ovarian cancer symptoms and risk factors so that they can diagnose the disease when it is in its earlier, treatable stages.

Survivors Teaching Students brings ovarian cancer survivors, like Katie, into medical school classrooms to share their stories and key information about the disease. The program is now conducted in more than 50 medical schools around the country and in a number of nurse practitioner, nursing and physician assistant training programs.

During Katie’s teaching sessions, she tells her story to illustrate the difficulty of early diagnosis and the resulting extended and recurring treatment, thereby putting a face and voice to the disease. In turn, Katie’s “students” gain insights into listening to a patient’s concerns and become sensitized to the psychosocial aspects of ovarian cancer as well as the need for early detection.

Katie is in her second year of teaching for the school district of East Troy, Wisconsin. Her kindergartners love her — so much so that her students sent her handmade get well cards when she was hospitalized and made her a quilt. As a result of her earlier surgeries, Katie has a 9-inch abdominal scar. When Katie’s kindergartner students ask if she has a scar from her surgery, Katie simply smiles and tells them that “scars are just tattoos with better stories.”

Katie’s courage and her willingness to make a difference in the fight against ovarian cancer was highlighted in a television news story created by ABC affiliate WISN (Channel 12). The inspirational WISN video is provided below.

[Quoted Source: Twenty-four candles – plus five – Patient celebrates Aurora Women’s Pavilion’s milestone, by Sue Suleski, WestAllisNOW.com, June 29, 2007.]

Young Cancer Survivor Teaches Medical Students About the Warning Signs and Symptoms of Ovarian Cancer

WISN – Channel 12 News Story