Yesterday, Libby’s H*O*P*E* added a new cancer video archive to the weblog courtesy of Vodpod.com. Currently, the archive contains approximately 90 videos that address many general cancer and ovarian cancer issues, as well as the personal voices of those affected by cancer. The new video archive is located on the homepage right sidebar. All you have to do is “click and play.”
Yesterday, Libby’s H*O*P*E* added a new cancer video archive to the weblog courtesy of Vodpod.com. Currently, the archive contains approximately 90 videos that address many general cancer and ovarian cancer issues, as well as the personal voices of those affected by cancer. The new video archive is located on the homepage right sidebar. All you have to do is “click and play.” The video arrangement is set to “random order” so that new videos appear on the homepage sidebar each time you visit Libby’s H*O*P*E*.
If you are aware of a general cancer/ovarian cancer video that is educational, heartfelt, inspirational, humorous, poignant, or is simply dedicated to the one you love, please provide us with the URL address of the video. The URL video address can be sent to us by email (click on the “contact” button located at the top of the homepage), or by comment (post a comment under this post). Upon receipt of the video URL address, we will add the referenced video to the new archive. We appreciate your participation in adding to our video archive and hope you find the archive helpful.
This year, approximately 565,650 Americans are expected to die of cancer — that’s more than 1,500 people a day. … Ovarian cancer causes more deaths than any other cancer of the female reproductive system. … In an unprecedented television event, NBC, ABC, and CBS will simultaneously devote 1 hour of commercial-free prime time to raise funds for the fight against cancer under an initiative called “Standup2cancer.”
What Do You Stand For?
This year, approximately 565,650 Americans are expected to die of cancer — that’s more than 1,500 people a day.
Cancer is the second most common cause of death in the US, exceeded only by heart disease. In the US, cancer accounts for 1 of every 4 deaths.
The budgets for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) have been flat for 5 years. Adjusted for inflation, the NIH budget has fallen 13 percent since 2003, and the NCI budget has fallen 12 percent since 2004.
The NIH estimate overall costs of cancer in 2007 at $219.2 billion:
$89.0 billion for direct medical costs;
$18.2 billion for lost productivity due to illness; and
$112.0 billion for lost productivity due to premature death.
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.
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. Another genetic syndrome, hereditary nonpolyposis colon cancer, 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 are expected in the U.S. in 2008.
An estimated 15,520 ovarian cancer deaths are expected in 2008.
Ovarian cancer causes more deaths than any other cancer of the female reproductive system.
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. (To learn more about the warning signs and symptoms of ovarian cancer, CLICK HERE).
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 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.
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%.
During 1987-2004, ovarian cancer incidence declined at a rate of 0.9% per year.
Tonight, over 50 of the most renowned personalities in TV, film, sports and music will come together to make history. In an unprecedented television event, NBC, ABC, and CBS will simultaneously devote 1 hour of commercial-free prime time to raise funds for the fight against cancer under an initiative called “Standup2cancer.” In May, Libby’s H*O*P*E*™ covered the opening of the Standup2cancer initiative. [May 30, 2008].
A spectacular line up of talent including Jennifer Aniston, James Taylor, Scarlett Johansson, Meryl Streep, David Cook, Christina Applegate, Lance Armstrong, Jack Black, Kirsten Dunst, Charles Barkley, America Ferrera, Halle Berry, Hilary Swank, Forrest Whitaker, Jimmy Fallon, Keanu Reeves will make personal appearances on the show. These celebrities and more will educate you, move you and entertain you. They will also be on hand to answer your calls in the celebrity phone bank.
To donate, CLICK HERE. The YouTube video below provides an explanation of how the public donations will be used.
SU2C: Where the Money Goes?
The premiere TV performance of “Just Stand Up” – the star studded charitable single in support of Stand Up To Cancer will be performed tonight by legendary recording artists Mariah Carey, Beyonce, Mary J. Blige, Rihanna, Fergie, Sheryl Crow, Miley Cyrus, Melissa Etheridge, Ashanti, Natasha Bedingfield, Keyshia Cole, Ciara, Leona Lewis, LeAnn Rimes, and Carrie Underwood.
“During National Ovarian Cancer Awareness Month, we remember those whose lives have been affected by this deadly disease, and we underscore our commitment to battling ovarian cancer for the sake of women around the world. …”
“For Immediate Release
Office of the Press Secretary
August 26, 2008
National Ovarian Cancer Awareness Month, 2008
A Proclamation by the President of the United States of America
During National Ovarian Cancer Awareness Month, we remember those whose lives have been affected by this deadly disease, and we underscore our commitment to battling ovarian cancer for the sake of women around the world.
Each year, thousands of American women are diagnosed with ovarian cancer. Many will lose their lives to this disease. Because ovarian cancer is often diagnosed at an advanced stage, it is vital for women to make regular visits to their doctors for screenings and to discuss risk factors and warning signs. Early detection is the best way to help doctors diagnose cancer before it has a chance to spread. It also makes treatment more effective and increases the chances for survival. I encourage all women to learn more about preventive measures and screening options that may help to save their lives.
America leads the world in medical research, and my Administration remains dedicated to the fight against ovarian cancer. I signed the “Gynecologic Cancer Education and Awareness Act of 2005,” or “Johanna’s Law,” that helps to raise awareness among women and health care providers about female reproductive cancers. Additionally, the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention are conducting important research to help make the innovative advances we need in order to eradicate this disease. NIH’s Cancer Genome Atlas is also helping researchers gain a greater understanding of the genetic sources of cancer. Together, we will continue building on our progress until there is a cure for cancer.
As we observe National Ovarian Cancer Awareness Month, we honor those who have fought this disease. We also recognize the compassionate caregivers, doctors, and researchers who are dedicated to preventing, detecting, and treating ovarian cancer.
NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2008 as National Ovarian Cancer Awareness Month. I call upon government officials, businesses, communities, health care professionals, educators, volunteers, and the people of the United States to continue our Nation’s strong commitment to preventing and treating ovarian cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this twenty-sixth day of August, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.
It is with deep regret that I must inform you that, Patty Franchi Flaherty, founder of the nonprofit organization Ovations for the Cure of Ovarian Cancer, peacefully succumbed to her nine-year battle with the disease on August 18, 2008, surrounded by friends and family. She was 53 years old. Patty was a legendary ovarian cancer advocate, who spoke for ovarian cancer survivors that lacked a voice. Inspired by the death of her mother from ovarian cancer nearly 35 years ago and driven by her personal struggle, she founded the Natick-based nonprofit Ovations for the Cure in 2005. The organization has since comforted countless women and donated over $1 million to various ovarian cancer research programs at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital, including the world-renowned Desensitization Program, through fundraising programs such as the annual Stuart Weitzman Fashion Show.
It is with deep regret that I must inform you that, Patty Franchi Flaherty, founder of the nonprofit organization Ovations for the Cure of Ovarian Cancer (Ovations For the Cure), peacefully succumbed to her nine-year battle with the disease on August 18, 2008, surrounded by friends and family. She was 53 years old. Patty was a legendary ovarian cancer advocate, who spoke for ovarian cancer survivors that lacked a voice.
Inspired by the death of her mother from ovarian cancer nearly 35 years ago and driven by her personal struggle, she founded the Natick-based nonprofit Ovations for the Cure in 2005. The organization has since comforted countless women and donated over $1 million to various ovarian cancer research programs at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital, including the world-renowned Desensitization Program, through fundraising programs such as the annual Stuart Weitzman Fashion Show.
“Patty Franchi Flaherty loses battle to ovarian cancer
Patty Franchi Flaherty, Founder of Ovations For the Cure of Ovarian Cancer (February 26, 1955 – August 18, 2008)
Natick, MA (August 19, 2008) – Patty Franchi Flaherty, Founder and President of Ovations for the Cure, lost her courageous 9-year battle with ovarian cancer and died peacefully at home on August 18, 2008, surrounded by family and friends.
Patty was a native of Weston who graduated from Bentley College in Waltham. Afterward, she joined Natick-based Franchi Management Company, Inc., where she worked as General Manager for over 30 years overseeing all business operations. She was also a long-standing trustee at Boston’s Dana-Farber Cancer Institute.
Diagnosed with ovarian cancer in early 1999, Patty lived 9 years before succumbing to the same disease that took her mother Madeline’s life 25 years earlier. After a promising remission, the cancer resurfaced in 2005. Frustrated by how little ovarian cancer diagnosis and treatment had changed in a quarter-century, Patty was certain that she wasn’t alone in her fight with ovarian cancer or in her frustration over medical insufficiencies. She was determined to help improve the odds for all ovarian cancer patients.
In early 2006, Patty co-hosted the Stuart Weitzman Fashion Show and Luncheon as a fundraiser. Proceeds from the show helped fund the Madeline Franchi Ovarian Cancer Research Fund at the Dana-Farber Cancer Institute. Then, with the help and support of her dearest friends, Patty launched a non-profit organization called Ovations for the Cure to fuel other research initiatives around the country and actively change the face of ovarian cancer.
In the 9 years she lived with ovarian cancer, Patty Franchi Flaherty turned a very personal crusade into a meaningful legacy for all women facing the disease. Thanks to Patty, women can now share information the likes of which her mother never had, and have hope where before there had been none. In just over 3 years’ time, Patty led Ovations’ growth from a lingering idea to a thriving organization-with momentum that continues to build across North America.
In July of 2008, The Savings Bank Life Insurance Company of Massachusetts awarded Patty its highest community honor, the prestigious Brandeis Award, which Patty’s husband Paul accepted on her behalf. The award pays homage to [U.S. Supreme Court] Justice Louis Brandeis and his defense of the rights of individuals, and was given to Patty in recognition of her innovation, bravery, and commitment to furthering the research and awareness of ovarian cancer.
Known for her unshakable determination, Patty turned her mission to beat ovarian cancer into a nationwide entity. In so doing, she created a living legacy of hope for everyone who faces the disease. Patty’s personal contributions to the fight against ovarian cancer have earned her a champion’s status in the hearts of those she has forever touched.
Creating a brighter future
Compared with other diseases making headlines today, ovarian cancer is far from attention-grabbing. Its foremost symptoms are so common and nonspecific that they are often mistaken for something else, if not ignored. Meanwhile, early detection methods are still in their infancy and late-stage diagnosis makes for only a limited number of successfully treated patients. Perhaps most surprisingly, ovarian cancer has the highest mortality rate of all gynecologic cancers.
Contributing to the high mortality rates of ovarian cancer is the lack of accurate screening and clear symptoms. As a result, only 19 percent of cases are detected before the cancer has spread beyond the ovaries, when treatment options are limited.
‘Ovarian cancer is often misunderstood, misinterpreted, and unfortunately misdiagnosed,’ said Dr. Ursula Matulonis, attending physician at Dana-Farber Cancer Institute and Brigham and Women’s Hospital and medical advisor to Ovations for the Cure.
‘In an effort to overcome this silent killer, Ovations for the Cure is dedicated to supporting cancer research centers to find accurate and early detection screenings. If caught in the early stages of diagnosis, ovarian cancer patients have a 90 percent chance of survival beyond five years and increased odds of beating the disease,’ Matulonis added. ‘Ovations for the Cure has helped change the dynamics of the medical profession by contributing valuable research funds for detection and treatment while educating women on its subtle symptoms.’
Today, Ovations continues to help make miracles possible for all women with ovarian cancer by shedding light on a disease that is still full of darkness. They have launched an aggressive ovarian cancer educational program, distributing awareness brochures to more than 3,000 physicians’ offices across the nation. Additionally, the development of their television and radio public service announcements outlining ovarian cancer symptoms has helped women identify the disease before it spreads to advanced stages. By spring of 2008, Ovations had already dedicated nearly one million dollars to ovarian cancer initiatives through the Dana-Farber Cancer Institute, Brigham and Women’s Hospital, City of Hope Hospital in L.A., and the University of Pennsylvania.
From loss to legacy
‘Patty started Ovations for the Cure with the idea of saving women from this horrible disease,’ said Debbie Soprano, one of Patty’s closest friends and first Executive Director of Ovations for the Cure. ‘While she could not save herself, her everlasting optimism and spirit will forever lead the fight against ovarian cancer until we find a cure.’
Patty Franchi Flaherty may have lost her own battle against ovarian cancer, yet through Ovations for the Cure, she’ll continue to help thousands of women to win the war. For more information about ovarian cancer visit www.ovationsforthecure.org”
About Ovations for the Cure
The Ovations for the Cure Foundation, a 501(c)(3) non-profit organization, is dedicated to the relentless pursuit of a cure for ovarian cancer. Ovations for the Cure has donated over $1 million to various ovarian cancer research initiatives such as the Dana-Farber Cancer Institute, Children’s Hospital Boston, City of Hope, University of Pennsylvania, and Brigham and Women’s Hospital. The Foundation spreads awareness of the most deadly gynecological disease through national events including the renowned Happy Feet Program, fashion shows with celebrity designers Stuart Weitzman and Carmen Marc Valvo, regional golf outings, 5k runs/walks, and various other initiatives. For more information about Ovations, please visit www.ovationsforthecure.org.
“On Sunday, September 7th, 14 Canadian cities will join in the only national fundraising event dedicated to overcoming ovarian cancer – the Winners Walk of Hope. … The annual walk has raised more than $3-million for ovarian cancer support and awareness programs across the country, including resources for newly diagnosed women; awareness campaigns targeted at well women; education sessions for medical students and health professionals, and research in ovarian cancer.”
“On Sunday, September 7th, 14 Canadian cities will join in the only national fundraising event dedicated to overcoming ovarian cancer – the Winners Walk of Hope.
Every three and a half hours, a woman in Canada is diagnosed with ovarian cancer. The Winners Walk of Hope raises crucial funds for Ovarian Cancer Canada – the country’s only national organization dedicated solely to advancing ovarian cancer awareness, education and research.
Parliament has officially recognized September as National Ovarian Cancer Awareness Month. Today, the five year survival rate for ovarian cancer is about 30% – making it the most deadly gynecologic cancer. There is no reliable screening test for ovarian cancer and symptoms can be subtle or mistaken for less serious conditions.
Ovarian Cancer Canada endorses the United States consensus on ovarian cancer symptoms. These symptoms are common to many women with the disease: swelling or bloating of the abdomen, abdominal pain, difficulty eating, feeling full quickly and frequent or urgent urination. Although the average woman’s likelihood of getting ovarian cancer is low – about one in 70 – any woman experiencing these symptoms persistently for longer than three weeks is urged to visit a doctor. Early diagnosis and referral to a gynecologic oncologist – a specialist in treating ovarian cancer – can increase the likelihood of surviving the disease. [emphasis added by Libby’s H*O*P*E*™]
Third time national title sponsor, Winners, and host sponsors, HomeSense and KPMG, are joined this year by new national presenting sponsor, Electrolux. ‘Winners is honoured to be the National Title sponsor of the Winners Walk of Hope for its third consecutive year,’ says Shannon Johnson, Winners Spokesperson. ‘The thousands of associates and customers who have walked this journey exemplify the values we live at Winners everyday: being a responsive and involved community partner. We are honoured by the support of participants in regions across the country and are hopeful that this year’s Walk will raise significant awareness and record funds needed in support of overcoming ovarian cancer.’
Ovarian Cancer Canada’s mission is to provide support and education to women with ovarian cancer and their families, raise public awareness and fund research that will ultimately lead to a cure for the disease. To date, the organization has committed more than $2.7 million to research in Canada. For more information about educational programs or to get involved, call 1-877-413-7970 or visit www.ovariancanada.org for a list of regional offices.
Ovarian Cancer Canada volunteer, Peggy Truscott, planted the seeds for the Winners Walk of Hope by organizing the first walk in 2002. Her legacy continues to grow:
The annual walk has raised more than $3-million for ovarian cancer support and awareness programs across the country, including resources for newly diagnosed women; awareness campaigns targeted at well women; education sessions for medical students and health professionals, and research in ovarian cancer.
The event is non-competitive and held in park settings. Walks are organized by volunteer committees in each community. Registration is $25 and is waived for registrants who raise $100 or more in pledges. For more information, to register or to pledge a walker, visit www.winnerswalkofhope.ca / www.randonneewinners.ca or call toll-free 1-877-413-7970, ext. 232.
Elizabeth Kay Remick passed away peacefully at 11:33 A.M. on Monday, July 28, at home with family by her side. Our family was blessed with Libby’s presence for 26 years. She battled ovarian cancer for 18 months with courage and an indomitable spirit.
A celebration of Libby’s life will be held on August 17th at 2:00 P.M. E.D.T. at the Highlands at Newberry Estates, in Dallas, Pennsylvania. We invite everyone who shared her life to gather, remember, and honor Libby … a precious wife, daughter, sister, cousin, niece, and friend. For those inspired, there will be an opportunity to share memories and experiences of being touched by such a wonderful person.
To honor Libby’s fight against ovarian cancer, a charitable organization will be established to expand upon the critical mission of the Libby’s H*O*P*E* weblog, which is to increase ovarian cancer awareness and provide educational support to ovarian cancer survivors and their families. In life, Libby always showed care and concern for those around her, but her spiritual legacy will shepherd the future charitable organization to uplift and empower countless ovarian cancer survivors on a wide-reaching global scale.
In lieu of flowers and cards, Libby’s family suggests that a small donation be made to the Ovarian Cancer Research Fund (OCRF). The OCRF is the largest private funding agency in support of ovarian cancer research. To date, OCRF has awarded $23 million in grants for the formulation of early diagnostic treatment programs and research towards the ultimate conquest of ovarian cancer.
Please CLICK HERE if you would like to make a donation to OCRF in Libby’s name and celebrate her life with a short written comment that will appear under her OCRF Wall of Hope tribute (written by Libby’s husband).
As many of you know, the H*O*P*E*™ weblog is dedicated to Libby, my 26 year old cousin. Libby was diagnosed with ovarian clear cell carcinoma in January 2007. I am deeply saddened to inform you that Libby lost her ovarian cancer battle this morning with her family at her side. Libby leaves behind her loving spouse, Steve, her mother Kathy, her father Dennis, and her sister Sara.
Libby and Steve are the inspiration behind H*O*P*E*™, and its contining campaign to make all women aware of the early warning signs and symptoms of ovarian cancer, as well as significant treatment developments relating to the disease. Upon hearing of Libby’s death this morning, my initial thought was to allow H*O*P*E*™ to go “dark” (from a post reporting perspective) for the next week in her honor. Immediately after that initial thought, two classic songs came to mind as a better way to honor Libby. I believe the song choices were inspired by Libby from a much better place.
The first song is a gospel ballad entitled “Hallelujah.” “Hallelujah” was written by Canadian singer-songwriter Leonard Cohen, who originally released it on his 1984 studio album entitled “Various Positions.” A general translation of the word “Hallelujah” in the Jewish and Christian faiths is “Great Praise to God.” The song “Hallelujah” is frequently used in television shows and movies during scenes involving death or heartbreak. The reason for this, I believe, is that the song evokes strong emotions that capture the struggle to love, pray, and live with faith in the midst of tragic human suffering. Libby experienced that same struggle throughout her treatment, yet continued her fight to the end with grace and courage.
“Hallelujah” has been covered by various singers more than 120 times (counting only recorded, not live, versions). American singer-songwriter Jeff Buckley recorded one of the best-known and emotionally moving covers of “Hallelujah” for his 1994 studio album entitled “Grace.” Buckley, not wholly satisfied with any one take, recorded the song more than twenty times. In September 2007, a poll of fifty songwriters conducted by Q Magazine listed “Hallelujah” among the all-time “Top 10 Greatest Tracks,” with John Legend calling Buckley’s version “as near perfect as you can get.” A hyperlink to Jeff Buckley’s cover version of “Hallelujah” is provided below as an acknowledgment of Libby’s courageous fight against ovarian cancer.
The second song is “[There’s a] Hole in the World [Tonight], which was recorded by The Eagles, a legendary U.S. rock band. In August 2001, The Eagles returned to the U.S. upon completion of a successful European tour to record a new album. The band was scheduled to begin recording on September 11, 2001. “Hole in the World” was written by the band in five part harmony to express the fear, sorrow, and future hope stemming from that tragic day. The lyrics set forth in the first verse of the song are as follows:
“There’s a hole in the world tonight.
There’s a cloud of fear and sorrow.
There’s a hole in the world tonight.
Don’t let there be a hole in the world tomorrow.”
I believe that Libby would abide by the message set forth in the last two sentences of that verse. Today, our family has a hole in its world as a result of Libby’s death, but H*O*P*E*™ cannot allow that fear and sorrow to create a hole in the world of another woman and her family through the failure to move ahead with its educational mission. Libby would tell you that “education increases survival.”
A video of The Eagles singing “Hole in the World” is provided below, as inspiration for all individuals who are involved in the fight against ovarian cancer. This fight will require perseverance through medical research, advocacy, education and fundraising until ovarian cancer is vanquished.
As an enduring tribute to Libby, H*O*P*E*™ revised the weblog homepage caption to read “Libby’s H*O*P*E*™.” We love you Libby and will forever miss you, but we will continue the fight against ovarian cancer on your behalf.
The Eagles – Hole In the World
Source: Wikipedia descriptions of the word “Hallelujah,” and Leonard Cohen’s song entitled “Hallelujah.”
“Stand Up To Cancer (www.standup2cancer.org), a new initiative to raise philanthropic dollars for accelerating ground-breaking research, launches today through an unprecedented collaboration uniting the major television networks, entertainment industry executives, celebrities and prominent leaders in cancer research and patient advocacy. ABC, CBS and NBC will donate one hour of simultaneous commercial-free primetime for a nationally televised fundraising event to air on September 5, 2008 (8:00 pm EDT and PDT), aimed at rallying the public around the goal of ending cancer’s reign as a leading cause of death. … Stand Up To Cancer’s innovative approach to research is designed to eliminate barriers that have traditionally inhibited creativity and collaboration by enabling the best and brightest investigators from leading institutions across the country and internationally to work together. These collaborative “Dream Teams” will pursue the most promising research, accelerating the discovery of new therapies for cancer patients and advancing efforts in cancer prevention research.Stand Up To Cancer monies will also be used for some high-risk, high-impact cancer research proposals, which are often not supported by conventional funding sources.”
“Stand Up To Cancer (www.standup2cancer.org), a new initiative to raise philanthropic dollars for accelerating ground-breaking research, launches today through an unprecedented collaboration uniting the major television networks, entertainment industry executives, celebrities and prominent leaders in cancer research and patient advocacy. ABC, CBS and NBC will donate one hour of simultaneous commercial-free primetime for a nationally televised fundraising event to air on September 5, 2008 (8:00 pm EDT and PDT), aimed at rallying the public around the goal of ending cancer’s reign as a leading cause of death.
‘For people struggling with this disease, or those who will be diagnosed, scientific breakthroughs can be a matter of life or death — literally. We want everyone to know that they can make a difference in this fight,’ said Couric. ‘Television is a notoriously competitive business. For the three major broadcast networks to join forces is a wonderful example of the power of working together, and we’re very grateful to have the opportunity to reach people all over the country through this show.’
‘As a motion picture and television producer, I’ve learned how incredibly powerful these mediums can be in generating public discourse, sometimes almost overnight. Our goal with this initiative and TV show is to ‘tip’ the conversation in this country about cancer – to get people riled up, so they want to do something about the fact that it still takes so many lives,’ said Laura Ziskin, who will produce the September 5th broadcast. Ziskin is a cancer survivor. Her film credits include the Spider-Man trilogy, As Good As It Gets, and Pretty Woman, and she also produced the 74th and 79th Annual Academy Awards.
The Stand Up To Cancer special will feature live performances by legendary recording artists and stars from film and television who will perform as well as present filmed content giving viewers insight into cancer. Various screening tests will be demonstrated in novel and entertaining ways. ‘Katie, Charlie and Brian will report on potentially life-saving research, speaking with both patients and scientists. We hope to entertain you, educate you, move and inspire you,’ Ziskin said.
Stand Up To Cancer (SU2C) is a program of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization, and was established by a group of media, entertainment and philanthropic leaders, whose lives have all been affected by cancer in significant ways. Stand Up To Cancer is bringing industry resources — people, as well as mediums such as television and the web — to bear in the fight against cancer as never before.
‘The statistics are staggering,’ Gibson said. ‘Cancer claims one person every minute of every day in the United States. Every year in this country, it takes the lives of more than half a million people…worldwide, cancer kills more than six million people annually. There has been progress on both the research and awareness fronts; as a result, there are over ten million cancer survivors in the US today. More work urgently needs to be done so that more people will survive,’ he said.
‘Not only has cancer touched all of our media organizations in profound ways, but it has touched each of us personally. This extraordinary broadcast will serve a number of purposes – we’ll share vital information with our viewers and hopefully raise funds that are so critical in the fight against this insidious disease,’ said Williams.
New developments in the laboratory are revealing the way cancer begins, progresses and spreads. Stand Up To Cancer is founded on the belief that now, more than ever, there is sufficient knowledge of the basic science of cancer, and that the technologies are finally available to translate this knowledge into real advances in treatment and prevention. Today’s cancer scientists are on the verge of life-saving discoveries. But what they desperately need are the funds required to mount an all-out assault. Stand Up To Cancer is dedicated to providing this much needed new source of cancer research funding.
Co-Chair of the Disney Media Networks and President of the Disney-ABC Television Group Anne Sweeney, CBS Corporation President and Chief Executive Officer Leslie Moonves, and NBC Universal President and Chief Executive Officer Jeff Zucker commented on their companies’ decisions to collaborate.
‘Everyone in our country has been touched by cancer in some way, shape or form. The thought that we could, in one hour of television, make a true difference in the fight against this disease was both exciting and inspiring,’ Sweeney said.
‘Television is a uniquely powerful medium and the networks joining forces offer an unparalleled opportunity to communicate loud and clear that we all have a stake in the fight against cancer,’ said Moonves. ‘Through the unity of broadcasters, entertainers and cancer groups alike, and the giving spirit of the audience at home, this television event has the potential to make a profound impact on our society’s ability to understand and battle this terrible disease.’
‘We’ve gone to the moon and pioneered a technology that revolutionized the way the world communicates. Applying that same innovation and commitment, scientists are on the cusp of making enormous strides in their efforts to combat cancer, but they need additional funding to do that. Through Stand Up To Cancer, and the September 5th broadcast, people all over the country can help,’ said Zucker, who is a cancer survivor.
AN INNOVATIVE RESEARCH MODEL
Stand Up To Cancer’s innovative approach to research is designed to eliminate barriers that have traditionally inhibited creativity and collaboration by enabling the best and brightest investigators from leading institutions across the country and internationally to work together. These collaborative “Dream Teams” will pursue the most promising research, accelerating the discovery of new therapies for cancer patients and advancing efforts in cancer prevention research. Stand Up To Cancer monies will also be used for some high-risk, high-impact cancer research proposals, which are often not supported by conventional funding sources.
The American Association for Cancer Research (AACR) will conduct expert scientific review of the research projects and administer funds raised through the initiative under the direction of a Scientific Advisory Committee. Nobel Laureate Phillip A. Sharp, Ph.D., Institute Professor at the Massachusetts Institute of Technology and the David H. Koch Institute for Integrative Cancer Research at MIT chairs the Committee, which includes highly accomplished clinical investigators, senior laboratory researchers and physician-scientists. ‘This project has tremendous potential to change the face of cancer research,’ said Sharp. ‘Our goal is to rapidly move new research discoveries out of the lab and into the clinic to save lives from cancer.’
‘I am pleased that AACR is a partner in the Stand Up To Cancer initiative,’ said Raymond N. DuBois, M.D., Ph.D., AACR President and Provost and Executive Vice President at M. D. Anderson Cancer Center. ‘Stand Up To Cancer model is distinctive because it emphasizes collaboration among scientists and will accelerate translational research on the verge of breakthroughs as well as provide an additional revenue stream to encourage novel, high-risk proposals that have great potential in making inroads against cancer.’
A Stand Up To Cancer Advocate Advisory Council is being formed, and will include leaders from approximately 25 organizations. Additionally, representatives from the advocacy community will work side-by-side with the scientists on the “Dream Teams,” so the perspectives of the patients and survivors they represent will be integrated into the direction of the research.
INITIATIVE DETAILS
In addition to the nationally televised network fundraising event, other key elements of the initiative include:
• Standup2cancer — With both interactive applications and rich content, the SU2C web site will foster an online community for everyone affected by cancer, utilizing the same approach as the televised special: it will move, educate and even entertain users. Features include: The Constellation: For a dollar donation or more, users can launch a star in honor of anyone who has received a cancer diagnosis. The Stand: An interactive facebook application to illustrate that the ‘cancer community’ encompasses everyone and that we are all connected by this disease. SUTV: Features video segments rich in scientific and research information, as well as ones that confront the personal and human side of cancer’s impact. SU2C Magazine: Offers seven sections of diverse content written by leading voices in every field.
• Public Service Announcement (PSA) Campaign – A series of TV, radio and print PSAs featuring celebrities and members of the general public to mobilize support for the campaign will begin to air and appear in publications soon.
‘I have lost beloved family members and friends to this dreaded disease,’ said Sherry Lansing. ‘Sometimes I feel as if cancer is an epidemic that will never end. But then I am reminded of diseases such as tuberculosis, small pox and polio that used to cause fear… and then I know that just like those other diseases, cancer can and will be defeated, too.’
Major League Baseball was the first donor to contribute to Stand Up To Cancer. ‘This initiative has presented an historic and unique plan to fight this deadly disease, and it is a privilege for me and Major League Baseball to join this magnificent effort,’ said Baseball Commissioner Allan H. (Bud) Selig. ‘We have pledged many of our valuable resources in an attempt to assist in every way we can.’
The American Association for Cancer Research (AACR) is the oldest and largest scientific organization in the world focusing on every aspect of high-quality, innovative cancer research. Its reputation for scientific breadth and excellence attracts the premier researchers in the field. By accelerating the growth and spread of new knowledge about cancer, the AACR is on the front lines in the quest for the prevention and cure of cancer.
About the Entertainment Industry Foundation
The Entertainment Industry Foundation (EIF), as a leading charitable organization of the entertainment industry, has distributed hundreds of millions of dollars to support programs addressing critical health, education and social issues.
About the Noreen Fraser Foundation
The Noreen Fraser Foundation utilizes film, television and web technologies to raise money as well as to educate and raise awareness about women’s cancers. The funds raised will be used to provide large grants to uniquely qualified cancer researchers.
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Media Contacts:
Ketchum Global Media Network Nicholas Scibetta — 646.935.4067 or 917.873.5299 mobile nicholas.scibetta@ketchum.com
Comment: In 1971, President Nixon “declared war on cancer.” Unfortunately, the technology and science of the 1970’s was simply not advanced enough to accomplish such a goal. The complexities of cancer are many including the following: (i) the area of “cancer” encompasses approximately 200 separate diseases, and (ii) the biological processes that allow cancer to thrive are nearly identical to those that allow a single cell, fertilized embryo to grow into a one trillion cell adult human. If you fast forward to this past decade, it is clear that current day technology and science is capable of achieving the short-term goal of holding cancer in check while pursuing the long-term goal of a cure. Discovery and identification of the human genome (Adobe Reader PDF document) in tandem with the mapping of biological “cellular pathways,” have produced highly successful advanced targeted cancer therapies such as Gleevec® and Herceptin®. The Human Genome Project identified approximately 20,500 genes in the human DNA sequence, and to date, that project fueled – in large part – the discovery of approximately 1,800 “disease genes” (Adobe Reader PDF Document). Our current ability to identify numerous genetic anomalies in cancer cells quickly, simultaneously and cost effectively allows for the targeting of such anomalies through pharmacological drug and/or gene therapy. Super computers allow scientist to generate the extensive bioinformatics necessary to produce complex models and analyze study data involving millions of permutations associated with 20,500 human genes, which hold approximately 3 billion pieces of DNA information. Although in its infancy, the use of “silencing RNA” (siRNA) to turn various genes on or off is making great strides toward controlling cancer in vitro and in vivo.
Human epigentics – another missing piece to the cancer puzzle – is the subject of the Human Epigenome Project, which is being conducted by the Human Epigenome Consortium. The Human Genome Project provided the blueprint for life, but the Human Epigenome Project will tell us how the human genome gets executed, as well as what determines when and where genes are switched on and off. The best example of epigenetics at work is the case of identical twins, where one twin is autistic while the other twin is normal. In this case, the genome DNA sequence of both twins is identical, but something else causes a change. That “something else” is represented by chemical modifications of genes that act as green or red traffic lights, which are superimposed on top of the DNA sequence or genome and tell the genes whether to be active or inactive. The study of these modifications-what they are, how they are laid down, and the processes that they control-is the field of research known as “epigenetics.” An “epigenome” is the description of these chemical modifications across the whole genome, but unlike the genome DNA sequence, each organism has multiple epigenomes-for example, in different cell types-that may change during its lifetime in response to environmental conditions or cues. And, knowing more about the human epigenome may provide clues as to what goes wrong in cancer and other diseases. Human Epigenome Project-Up and Running, Bradbury J.; PLoS Biol 1(3): e82 (2003).
The Stand Up to Cancer paradigm is truly groundbreaking.It is designed to “end run” bureaucratic obstacles to cancer control and cure discoveries. Through world-class private sector philanthropy, the medical, biological, genetic, and translational research necessary to tackle this ambitious goal will be carried out in a fully coordinated effort by the brightest scientific minds in the nation and around the world. Under the Stand Up To Cancer approach there will be accountability for results and oversight to guard against conflicts of interest. If you carefully review the names of those directly or indirectly associated with the Stand Up to Cancer organization, you will discover that they represent those individuals, scientists, and companies that had the greatest impact – through fundraising or science – on cancer therapy developments and discoveries over the past decade. I provide below the Stand Up To Cancer Public Service Announcement video, along with an additional video featuring the Stand Up To Cancer news coverage by CBS. To view additional Stand Up To Cancer videos featuring Katie Couric, Larry David, Sidney Poitier, Robert Bazell, Ben Teller & other celebrities who support the movement, click here.
What Can You Do?: Stand Up To Cancer invites donations in many forms. For a contribution of $1.00 or more, you can “create a star” as part of the Constellation program in the name of a cancer survivor or in memory of a family member or friend who lost the battle to cancer. On a larger scale, you can form a “private” team and request donations from family, friends, and co-workers. Alternatively, if you do not want to form a private team, consider making a donation to the “Choose H*O*P*E*” open team that was formed recently by the H*O*P*E*™ weblog or make a standalone donation. In the future, you will even be able to donate through your cell phone. Through any form of donation, you are making a difference in the fight against cancer!
“When someone is going through a life-threatening illness, one of the greatest gifts to receive is the out-pouring love and support from the community,” Totushek said. “I have no idea how many people helped me, but I know I couldn’t have done it without them. You don’t have to know someone to help them.” Mitchell is grateful to Totushek and the girls for putting on the clinic. “I’m very surprised and humbled,” Mitchell said. “It’s a strange feeling that someone I never meant would want to do something so generous. She’s a hero.”
“Maria Totushek is all too familiar with cancer.
Though now in remission from breast cancer, which was diagnosed four years ago, Totushek remembers everything about the disease, including the love and support she received from family, friends and even from people she didn’t even know.
Now Totushek, along with a big assist from some Folsom teens, is helping someone else battling cancer. This isn’t a family member or friend. In fact, it’s someone none of them have never ever met.
Kindra Mitchell, 45, lives in Reno, NV, with her husband, Jerry, and is currently battling ovarian cancer. Mitchell, a mother of three girls ages 15 to 23, is friends with Jeff Phillips, a teacher at Blanche Sprentz Elementary School in Folsom [California], who also is a good friend of Totushek and lent a big hand to her when she was battling cancer. When Phillips told Totushek about his ailing friend, Totushek had to do something.
‘When someone is going through a life-threatening illness, one of the greatest gifts to receive is the out-pouring love and support from the community,’ Totushek said. ‘I have no idea how many people helped me, but I know I couldn’t have done it without them. You don’t have to know someone to help them.’ Mitchell is grateful to Totushek and the girls for putting on the clinic. ‘I’m very surprised and humbled,’ Mitchell said. ‘It’s a strange feeling that someone I never meant would want to do something so generous. She’s a hero.’
Totushek, who has four soccer-playing daughters between the ages of 12 and five, came up with the idea to hold a soccer clinic with all the proceeds going to Mitchell. The clinic, to be held next month, is called the Kick it for Kindra Soccer Clinic and Fundraiser. Since coming up with the idea, Totushek has left a majority of the details to some Folsom teens. To Totushek, this is where the true story lies. ‘These soccer-loving teens are coming together to support a family battling ovarian cancer,’ Totushek said. ‘The girls have taken on the goal to help raise money for a family in need. They’re volunteering their time and talent to give back to the community. I hope other teens can be inspired and people in the community can see that to help someone in need can turn into a blessing for an entire community.’
The teens working on the project include Vista del Lago freshmen Alexis Reinbolt and Catherine Lehman, Folsom High sophomore Laura Cox and freshman Chelsea Cino and St. Francis freshman Beth Balbierz. The girls have been meeting over the last month, planning the drills and skills to be taught at the clinic. All are enthusiastic about the clinic. ‘It’s a blessing to me because I love soccer and I’m helping someone out at the same time,’ Reinbolt said. ‘I’ve learned a lot about myself since I became involved in it.’ For Cox, cancer is something that she’s dealt with personally. ‘My grandma is a breast cancer survivor and I’m very grateful for that,’ Cox said. ‘My grandfather died of lung cancer. I know how families struggle with cancer. I really wanted to do something to fight against it.’ Like Reinbolt, Cino and Balbierz said they wanted to help with the clinic because of their love for soccer and because it’s for a good cause. As for Lehman, it’s an opportunity to help someone in need. ‘If I was in her position, I’d want someone to help me,’ Lehman said. ‘It feels good to give back, because a lot of people don’t get that opportunity. I never thought to do something like this, but I’m having a lot of fun with it. It feels good to be able to help someone.’
Totushek’s oldest daughter, 12-year-old Madison, has also chipped in and helped her mom with a lot of the behind-the-scenes work encompassing little yet often overlooked details.
There are three sessions to the Kick it for Kindra Soccer Clinic and Fundraiser. The clinic is for boys and girls ages five to nine years old and will be held June 7-8 from 10 to 11:30 a.m., June 10 and 12 from 6 to 7:30 p.m. and on June 21-22 from 10 to 11:30 a.m. The camp will be held at Ed Mitchell Park and costs $35. All the proceeds of the clinic will go the Mitchell family. ‘Right now we’ve got 50 kids signed up,’ Totushek said. ‘We can accommodate 300, but I’d be thrilled if we got 100.’
Anyone interested in participating in the camp can e-mail Totushek at mariatotushek@folsomsoccerclub.org or visit www.folsomsoccerclub.org for more details.”
[Title Quote: The expression “pay it forward” is used to describe the concept of third party beneficiary in which a creditor offers the debtor the option of “paying” the debt forward by lending it to a third person instead of paying it back. In 2000, Catherine Ryan Hyde’s novel Pay It Forward was published and adapted into a Warner Brothers film bearing the same title. In Hyde’s book and the movie, “paying it forward” is described as an obligation to do three good deeds for others in repayment of a single good deed that one receives. Such good deeds should be things that the other person cannot accomplish on his or her own. In this way, the need to help one another can spread exponentially through society, creating a social movement with the goal of making the world a better place. The idea of the book has been championed in real life by the Pay It Forward Foundation. The Foundation focuses on bringing the idea of paying it forward to school age children, parents, and educators. The simple idea of doing good works for others to repay the good works received is easily conveyed to children and encourages them to be socially aware and take a role in making the world a better place. The main character of the book was a 12-year-old child, thus giving other children a similarly young role model to emulate.]
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.
“Nationwide, there are 10.5 million survivors, thanks to better and earlier detection and new treatments that enable many people to survive their cancer or manage their disease for long periods of time. One out of every six people over 65 is a cancer survivor, and 1.4 million were diagnosed more than 20 years ago. According to the Centers for Disease Control and Prevention and the National Cancer Institute, nearly 64 percent of adults and about 75 percent of children will survive a diagnosis of cancer.”
“When a patient goes through cancer treatment, the support of family, caregivers and friends is vital. So when Houston celebrates cancer survivorship on Sunday, June 1 at a free citywide event, it is an occasion to be shared among survivors and their many supporters.
This is the first citywide event held to honor survivors in the Houston area, raise awareness of the many resources available and recognize the financial, interpersonal, physical and spiritual effects that the disease and its treatment can bring on. The event is open to any cancer survivor or patient in the Houston area, regardless of where they received treatment, and their families and friends.
The inspirational program will include a keynote address by John Vallely, a former Houston Rocket who also is a cancer survivor and caregiver. He will be joined on the stage by LaSalle Leffall, M.D., the two-term chair of the President’s Cancer Panel, and a number of cancer survivors who will share their stories. Leading the program will be emcee Linda Lorelle.
‘Survivorship Houston is an event that will honor the spirit of survivors and acknowledge the tremendous journeys that they have walked with their families, caregivers and friends,’ said Jo Ann Ward, chair of the Survivorship Houston Coalition and associate vice president for public affairs at The University of Texas M. D. Anderson Cancer Center. ‘We invite everyone who has been touched by cancer to come to the event, share their experience and gain strength and inspiration.’
In addition to the program, there will be live music, an exhibit area, healthy snacks and a children’s activity area.
In the Houston area, hundreds of thousands of cancer survivors go to work, attend school, volunteer, play sports, travel and live their lives. Many survivors experience little or no major change in their lives after their treatment but some carry lingering effects, such as pain, numbness, fatigue, emotional trauma and financial strain.
Nationwide, there are 10.5 million survivors, thanks to better and earlier detection and new treatments that enable many people to survive their cancer or manage their disease for long periods of time. One out of every six people over 65 is a cancer survivor, and 1.4 million were diagnosed more than 20 years ago. According to the Centers for Disease Control and Prevention and the National Cancer Institute, nearly 64 percent of adults and about 75 percent of children will survive a diagnosis of cancer.
To register, get more information and see the full listing of Survivorship Houston Coalition members, click on www.survivorshiphouston.org or call 713/745-0549. Survivorship Houston is free but registration is required.”
The title quote above was spoken by Elana Waldman, who is the inspirational ovarian cancer survivor highlighted and honored by H*O*P*E* this week. Simply put, Elana Waldman is an outstanding advocate for cancer research. She educated and inspired luncheon guests at the 2007 Israel Cancer Research Fund (ICRF) Women of Action Luncheon held in Toronto, Canada on April 19, 2007. During her talk, Elana provided an account of her illness and discussed her decision to be the first person in Canada to try an unconventional chemotherapy protocol. “I’m young,” Elana says, “my daughter is young, and the numbers are stacked against me. You do whatever you have to do to get the most time possible.” “Cancer,” Elana says, “has given me a clearer understanding of what life is about.”
As you will see from the excerpt of her April 2007 speech and the video below, “Elana’s courageous battle with ovarian cancer will touch your heart. Elana’s appreciation for everyday miracles will open your eyes. Elana’s determination to help others will inspire you …”
“…I was diagnosed 20 months ago on August 19, 2005. Time is running.
On September 23, 2005, after extensive surgery, I was told the cancer was stage 3c despite my doctor’s earlier belief that it was not that advanced. The diagnosis meant that I needed chemotherapy and only had a 30% chance of surviving 5 years from that point. At 32 years old, while trying to build my family and with a 2 year old daughter, this news was devastating.
When I was told the statistics though, I guess I couldn’t wrap my head around them because I never thought I would die. No one I knew had ever died from cancer. My own mother had fought and beat the disease twice. I knew I had a tough road ahead of me but I always focused on the light at the end of the tunnel and just did what I had to do to get better. It was hard but many others had done it before me and I knew I could and had to do it for my family…..
My cancer has returned. When I was told this time, the news hit me like a Mack truck. The numbers for a recurrence are even worse than for an original diagnosis and my chances for survival are small. I understood the numbers this time and the implications for me and my family. The diagnosis shook me to my core and I had a huge reality check. I have cancer, a potentially fatal disease. This is not something that regular medication can treat and I am now literally fighting for my life, everyday. I have given up my career to focus on my health and my family. I want to enjoy as much time as I can while I feel strong and healthy. I want to be a spokesperson for ovarian cancer for a long time but more importantly I want to see my daughter grow up and I want to grow old with my husband.
These simple goals in life that I now set for myself are in jeopardy so I have truly learned to enjoy all the everyday miracles that I do have – my daughter’s smile, my husband’s kiss, my mother’s laugh. I am more than this disease and I do not want to let it take away everything else that makes me the person that I am. I am asking you to help me continue to enjoy these miracles. Your donations and your generosity allow our scientists to do cutting edge research which will hopefully lead to a cure for cancer. Your support for ICRF directly benefits people who are battling cancer and on all their behalves, I say thank you.”
The ovarian cancer survivor highlighted this week is Maddie Kullen. Mattie is different from virtually all other ovarian cancer survivors because she was diagnosed with the disease when she was 6 years old. Upon diagnosis, Maddie had a 6-inch tumor removed at Children’s Hospital Boston, followed by 16 weeks of chemotherapy. Maddie’s treatments are now over and she is cancer-free.
If you think a 6 year old cannot make a difference in the fight against ovarian cancer, you are absolutely wrong. Maddie is a spokesperson for Ovations for the Cure and participated in that group’s ovarian cancer awareness public service announcement. Maddie was also part of the Boston Marathon Jimmy Fund Walk. Her best idea was the creation of a program at Children’s Hospital Boston that provides young cancer patients with an ice cream break each week. This program is called “Sundaes on Saturday,” and it is supported by monies raised through Kullen family fundraisers. Please take time to watch Maddie’s ovarian cancer awareness public announcement below and visit Ovations for the Cure if you are interested in finding out more about the mission of that group.
When asked by a WBZTV Boston journalist to comment on her appearance in the Ovations for the Cure ovarian cancer awareness spot, Maddie simply responded, “Cool! And then once I saw the commercial I went back to watching kid shows.”
Comment: Although Maddie’s ovarian cancer diagnosis represents an extremely rare case, it is important to note that ovarian cancer does not discriminate when it comes to age, race or financial status. For more information regarding the early warning signs and symptoms of ovarian cancer, visit the H*O*P*E* blog page entitled, “Warning Signs and Symptoms.”
Maddie Kullen in Ovations For the Cure Ovarian Cancer Public Service Announcement
Johanna’s Law is named after Johanna Silver Gordon, a dynamic woman and former schoolteacher, who lost her life to ovarian cancer despite being a health conscious woman who visited the gynecologist regularly. Sadly, Johanna did not recognize the early symptoms and warning signs of ovarian cancer until AFTER being diagnosed with an advanced stage of the disease. Lack of symptom recognition contributed to a lengthy —and ultimately lethal — delay in Johanna’s diagnosis. Tragically, Johanna’s story of delayed diagnosis is all too common. Thousands of U.S. women annually are stunned not only by diagnoses of gynecologic cancer, but also learn after the fact that the symptoms experienced in the months prior to their diagnoses were common symptoms of these cancers. The problem is particularly common with respect to ovarian cancer, where a pervasive lack of knowledge regarding symptoms commonly leads to lengthy delays in disease diagnosis. Additionally, women are frequently misdiagnosed with benign conditions before the correct diagnosis is made by a health care professional.
The Gynecologic Cancer Education and Awareness Act (P.L. 109-475) was passed by the 109th Congress and signed into law in early 2007. This law provides up to $16.5 million for awareness and education through a national public service campaign that will include written materials and public service announcements.
The passage of Johanna’s Law was required because too many women are diagnosed in later stages of gynecologic cancers; if these women were diagnosed earlier, their chances of survival would be greater. Women with ovarian cancer have a five-year relative survival rate of more than 90 percent if diagnosed in Stage I. Unfortunately, less than 20 percent of ovarian cancer cases are diagnosed in Stage I. The overall five-year relative survival rate for ovarian cancer is 45 percent. Due to the lack of an early screening test for ovarian cancer (however, see Yale Blood Test Detects Early Stage Ovarian Cancer with 99% Accuracy), women and health care providers must be aware of the signs and symptoms of gynecologic cancers to act in the best interests of women.
Legislative History
In 2004, the bill was introduced in the U.S. House of Representativies (House). In 2005, the bill was introduced in the U.S. Senate (Senate). The House held a hearing on the bill in 2006. It was passed by unanimous consent of the Senate in 2006 and signed into law by President George W. Bush in early 2007. The Ovarian Cancer National Alliance (the Alliance) worked to secure the implementation funding of Johanna’s Law through the U.S. Congressional appropriations process. The Alliance requested $9 million to implement Johanna’s Law. In the 2008 fiscal year, this program was appropriated $6.5 million by the U.S. Congress. The Alliance will request the U.S. Congress to fully fund Johanna’s Law program for $10 million in the 2009 fiscal year.
Adoption of the Ovarian Cancer Symptoms Consensus Statement
In mid-2007, a number of medical organizations and related groups agreed upon and released a Consensus Statement listing the primary symptoms of ovarian cancer. These symptoms, long recognized by patients, and scientifically documented in the medical literature, are:
* Bloating
* Pelvic or abdominal pain
* Difficulty eating or feeling full quickly
* Urinary symptoms (urgency or frequency)
A woman who experiences these symptoms persistently for several weeks should consult with her doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.
Often, women and health care providers mistake ovarian cancer for gastrointestinal disorders or early menopause. While symptoms may seem vague, they can be lethal without proper medical intervention. Johanna’s Law provides for an education and awareness campaign that will educate health care providers with respect to, and increase women’s awareness of, this disease.
Comment: The impetus for adoption of Johanna’s Law can be traced to Sheryl Silver, Johanna’s sister. Sheryl is the founder and president of the Johanna’s Law Alliance for Women’s Cancer Awareness. The adoption of Johanna’s Law should heighten the awareness of women in the U.S. regarding the primary symptoms and warning signs associated with ovarian cancer in the earliest stages of the disease. Sheryl Silver’s perseverance on behalf of the memory of her sister led to the adoption of a law that will undoubtedly save thousands of lives in the future.
Periodically, the H*O*P*E* Blog will highlight a cancer survivor that makes a difference. Sharon Blynn is a prime example. In October 2000, Sharon Blynn was visiting her family in Miami when she discovered that her stomach pains were not caused by irritable bowel syndrome. Rather, the pain was caused by a rare, non-invasive form of ovarian cancer. Local doctors informed her that she would need surgery and chemotherapy.Rather than return to her home in New York, Sharon decided to seek treatment in Miami with the support of her family — the anticipated short family visit turned into a three year journey.
During her chemotherapy treatments, Sharon, who was in her 20s, recalls being the youngest ovarian cancer patient in the room. She also remembers her twin sister sleeping in the chair beside her bed and the women with cancer who would not look at themselves in the mirror because of surgery or hair loss.
Sharon was inspired by her experience and the people she met throughout her journey to start a website, baldisbeautiful.org, which is all about helping women living with cancer feel beautiful — she’s been shaving her head ever since. “Through my Bald Is Beautiful work,” she says, “I have found a new focus and purpose – a new level of joy.”
Sharon credits cancer with giving her a deeper sense of who she is and the importance of a healthy mind-body-spirit lifestyle. The disease also intensified her desire to share that message with people. “Cancer brought me closer to feeling alive in every part of my life, from how I feel about myself, to how I feel about my relationships with my family and friends, and my relationship with the whole world around me.” Source: [Bristol-Myers Squib website].
I encourage you to visit Sharon’s website and view her YouTube video — by doing so, you will truly discover her honesty, talent, and resilient human spirit.
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”
–Mary Anne Radmacher
Yesterday, Libby’s H*O*P*E* added a new cancer video archive to the weblog courtesy of Vodpod.com. Currently, the archive contains approximately 90 videos that address many general cancer and ovarian cancer issues, as well as the personal voices of those affected by cancer. The new video archive is located on the homepage right sidebar. All you have to do is “click and play.” The video arrangement is set to “random order” so that new videos appear on the homepage sidebar each time you visit Libby’s H*O*P*E*.
Libby's H*O*P*E* 