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.”
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
An interesting article appearing in USA Today on January 14, written by Cheryl Alkon, describes the use of “crowd funding” to assist individuals who may be experiencing tough financial times — or even bankruptcy — due to, among other things, medical costs, including those incurred to treat cancer.
What is “Crowd Funding?”
The term “crowd funding” describes the collective effort of individuals who network and pool their money, generally through the Internet, to support efforts initiated by other people or organizations. For example, crowd funding can be used to support disaster relief, citizen journalism, political campaigns, startup company funding, movie or software development, and scientific research.
Crowd funding is even taking on national significance through enacted federal legislation. In April 2012, President Obama signed the JOBS (Jumpstart Our Business Startups) Act, which enables entrepreneurs, start-ups, and small businesses to raise funds and gather investors through equity crowd funding.
An interesting article appearing in USA Today on January 14, written by Cheryl Alkon, describes the use of crowd funding to assist individuals who may be experiencing tough financial times — or even bankruptcy — due to, among other things, medical costs, including those incurred to treat cancer. The crowd funding websites listed by Alkon include: the Human Tribe Project (humantribeproject.com), GiveForward (giveforward.com), FundRazr (fundrazr.com), and GoFundMe (gofundme.com).
It is estimated that $2.8 billion was raised by all types of crowdfunding websites in 2012.
The Human Tribe Project Leadership Team: (left-to-right) Ryan Foutz, Jaclyn Foutz, Matt Foutz, and Steve Bever.
The concept of crowd funding within the context of cancer treatment is best understood through the genesis of The Human Tribe Project.
In early 2008, Jaclyn Foutz learned that her longtime friend, Kindra McLennan, had been diagnosed with a rare form of cervical cancer. Not knowing how to help Kindra, who lived 1,500 miles away, Jaclyn did what anyone thirty-something would do: she turned to Google®.
Her search turned up various websites listing ways to help support and encourage a friend through cancer, and of those, some even suggested fundraising ideas. Realizing that they could not be there to hold Kindra’s hand through the chemotherapy and radiation, Jaclyn and her friends decided to raise money for Kindra and her husband to relieve the financial burden associated with her cancer treatment. Jaclyn identified websites suggesting fundraising options, but all seemed too local and small in scope to have the kind of impact that she and her friends wanted. At the time, Jaclyn’s husband, Ryan Foutz, his brother, Matt Foutz, and Ryan’s childhood friend, Steve Bever, owned a wholesale jewelry company. They donated turquoise beads, and Jaclyn and her friends sold turquoise necklaces in support of Kindra. They sold the necklaces in-person to friends, relatives and coworkers, and by e-mail to people in Kindra’s support network all across the country.
The project was a huge success; they sold 350 necklaces and raised $10,000. They were inspired by the breadth of Kindra’s network of friends and the willingness of complete strangers to buy the necklaces.
Initially, Kindra refused to take handouts from her friends and family; however, when she knew her friends and family were receiving a necklace in return for their monetary donation, her concerns were alleviated. And, when Kindra saw everyone from her best friend to her chemotherapy nurse wearing the necklaces, she felt an emotional support as great as the financial support that she had received.
After extensive research, Jaclyn and Ryan learned that there were no resources available to do what they did on a larger, commercial scale. They found companies selling products in an effort to raise money for non-profits, foundations, or research institutions, but none raised money directly for individuals during their time of need.
During their research process, they were astonished to learn about the financial burden that individuals suffering from an illness often face. For example, with respect to breast cancer alone, it is estimated that out-of-pocket expenditures and lost-income costs for women with insurance coverage average $1,455.00 per month. The majority of those out-of-pocket costs are related to co-payments, hospitalizations, and specialist visits.
In 2006, twenty-five percent of cancer patients reported that they had to use all or most of their savings to deal with cancer treatment costs. Approximately fifty percent of all personal bankruptcies filed in the U.S. are filed due to medical expenses. Also, researchers have found that there is a strong connection between emotional support and healthcare outcomes. Jaclyn and Ryan found these statistics astounding; there was a better way to aid individuals and enhance the benefits of strong support networks.
Through all of this, Jaclyn, Ryan, Matt, and Steve saw firsthand the power of the humanitarian spirit and how that spirit connects us all. It was from this experience that Human Tribe Project was born.
Ultimately, Kindra McLennan used some of the funds raised on the website to take a trip to Las Vegas for her 30th birthday, four months before she died. “If that’s what you feel you need to use the money for, that’s one of the things you can do when you know the people who are donating to you,” Jaclyn Foutz says. The Human Tribe Project website launched in early 2009, six months after McLennan’s death.
Not only were Kindra’s friends and family able to raise approximately $10,000 on her behalf, but Kindra could see their love and support in every necklace that was worn. The Human Tribe Project website is dedicated to Kindra’s memory.
After helping establish the Human Tribe project, Matt Foutz never anticipated using the service for his own family. Two years ago, Mathew’s daughter Mia was diagnosed with a brain tumor, called a “medulloblastoma,” at the age of five. Mia received surgery, months of chemotherapy, and radiation treatment, the net result of which was permanent memory, mobility and endocrine issues. Through crowd funding, Matthew Foutz has already raised $11,520 for Mia.
Thoughts From Those In the Field
The USA Today article cites several individuals who are actively involved, directly or indirectly, in the field of crowd funding.
Catherine Chapman, a philanthropic consultant with Fullanthropy, a Louisville, Ky., consulting firm that advises non-profits on charitable best practices said:
Crowd funding is doing what has always been done, but taking the technology we have to make it viral. People give on these sites often because they have been asked to do so by a friend or a friend of a friend. The personal element is a lot more compelling than sending a check to a charity. Doing that is anonymous and you can’t relate, but if it’s your friend who has cancer, you want to help.”
Daryl Hatton, the founder and CEO of FundRazr, said:
“People know who they are donating to, but one of the big surprises is that people saw how many complete strangers were donating to them. The message has to really resonate with your friends, or else it won’t go anywhere. If you don’t get that social proof, then people don’t get donations. Our natural skepticism kicks in, and they hold back on hitting that button.”
According to the USA Today article, it appears that scams are rare. “Scammers tend to lack social-media followings, as they don’t want to identify themselves,” said Hatton. “Those with integrity have networks. To give you scale, approximately one in 5,000 medical FundRazrs get shut down.”
In the end, a cancer patient can use a crowdfunding site to tell his or her story about why money is needed, using blogs and updates to keep potential donors informed. Most websites collect donations and forward them directly to the person in need. The websites can take out a small portion of the donation for administrative and other costs, which can range from 5%-20% of funds raised. It is important to note that most crowd funding websites are not tax-exempt, non-profit organizations, and therefore, donations are not considered tax-deductible.
The USA Today article provides a few common sense tips to those who may be interested in crowd funding: (i) perform thorough due diligence on various websites beyond looking for a nice appearance (i.e., evaluate news stories, customer reviews, complaints, etc.); (ii) research online tips for writing a compelling narrative about yourself and the need for money; (iii) give frequent updates (as most blog writers learn quickly); and (iv) know that fundraising is time-consuming, but realize that you are your own best advocate.
There is a saying that “to the world you may only be one person, but to one person you may be the world.” For those of you who may be thinking about helping a cancer survivor through crowd funding, keep in mind that “grand” opportunities to help others seldom arise, but small, yet critical, opportunities surround us everyday.
Sources:
“Crowdfunding” sites pay medical bills, raise hopes, written by Cheryl Alkon, USA Today, January 14, 2013.
The National Ovarian Cancer Coalition (NOCC) Central Maryland Chapter announces its annual “Walk to Break the Silence on Ovarian Cancer” to be held on Sunday, September 18, 2011 at Quiet Waters Park, located in Annapolis, Maryland.
The National Ovarian Cancer Coalition (NOCC) Central Maryland Chapter announces its 2nd Annual “Walk to Break the Silence on Ovarian Cancer” to be held on Sunday, September 18, 2011 at Quiet Waters Park, located in Annapolis, Maryland. This event will be held “rain or shine.”
Registration will open at 7:30 a.m. at the Blue Heron Center located within the park. The 5K Run will begin at 9:30 a.m. The 3K Walk is scheduled to kick off at 9:35 a.m. All participants will receive a T-shirt. The race will be timed and various age awards will be presented.
To view a complete schedule of events, click here. To view the event brochure, click here. To view a video from last year’s event, click here.
September is Ovarian Cancer and Gynecologic Cancer Awareness Month. “We walk and run to raise funds but just as importantly we walk and run to raise awareness”, said Nancy Long, Co-president of the Central Maryland Chapter. “There is no early detection test for ovarian cancer. That is why education and awareness are currently our best defense against this disease.”
Survivors are celebrated at the Run/Walk, so please visit the survivors’ tent for gift bags. In addition, you can commemorate the occasion with a special survivors’ photo. Bring a photo of yourself, a survivor you know, or a lost loved one for the survivor/memory banner.
Quiet Waters Park - South River Overlook, Annapolis, Maryland
Quiet Waters Park - Bridge & Fountain, Annapolis, Maryland
More than 20,000 women are diagnosed with ovarian cancer each year, and approximately 15,000 women die from the disease annually. Unfortunately, most cases are diagnosed in late stages when the prognosis is poor. However, if diagnosed and treated early, when the cancer is confined to the ovary, the five-year survival rate is over 90 percent.
There is currently no early detection test for ovarian cancer, and Pap tests do not detect the disease. That is why it is imperative that the early signs and symptoms of the disease are recognized, not only by women, but also by their families and the medical community.
Symptoms of ovarian cancer may include bloating, pelvic or abdominal pain, trouble eating or feeling full quickly, and feeling the need to urinate urgently or often. Other symptoms of ovarian cancer may include fatigue, upset stomach or heartburn, back pain, pain during intercourse, constipation, and menstrual changes. Women who experience these symptoms for longer than two weeks, especially if these symptoms are new to them, are encouraged to visit their health care provider.
Many women attending this NOCC event are anxious and willing to tell their stories of, or related to, diagnosis, misdiagnosis, the hardships of treatment, the potential for inherited genetic mutations, and the fears and joys of being a survivor.
To register for the NOCC Central Maryland Chapter’s “Walk to Break the Silence on Ovarian Cancer,” please call 443-433-2597 or visit www.nocc.kintera.org/mdcentral.
Nancy Long and Paula Kozik are the Co-presidents of the NOCC Central Maryland Chapter. Libby’s H*O*P*E*™ will be featuring the inspirational stories of these two amazing women as part of its Vox Populi (“voice of the people”) feature during National Ovarian Cancer Awareness Month.
About the National Ovarian Cancer Coalition
The mission of the National Ovarian Cancer Coalition, a 501 (c)(3) charitable organization, is to raise awareness and promote education about ovarian cancer. The Coalition carries out its mission through a toll-free Help Line, local NOCC Chapters, a comprehensive website, peer support, written publications, and awareness/educational programs. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer. If you would like more information about the “Break the Silence” campaign, or wish to contact one of the local NOCC Chapters, visit www.ovarian.org or call 1-888-OVARIAN (1-888-682-7426).
Mrs. Australian Quest Finalist Veronica Cristovao is raising ovarian cancer awareness “Down Under,” and she hopes to use the pageant as an international platform to further her ovarian cancer advocacy.
Did you know that February is national Ovarian Cancer Awareness Month in Australia?
Veronica Cristovao is a finalist in the Mrs. Australia Quest pageant which supports Ovarian Cancer Australia. Veronica hopes to use the pageant as an international platform for ovarian cancer awareness.
According to the Australian National Breast and Ovarian Cancer Centre, approximately 1,200 Australian women were diagnosed with ovarian cancer in 2010. On average, three Australian women are diagnosed with ovarian cancer every day, while two Australian women die from the disease every day or one woman every twelve hours. Ovarian cancer accounts for 55 percent of all Australian gynecological cancer deaths. By way of comparison, 88 out of every 100 Australian women diagnosed with breast cancer will be alive five years after diagnosis, whereas only 40 out of every 100 Australian women diagnosed with ovarian cancer will be alive during that same time period.
These statistics are alarming, and until effective prevention and early detection methods can be identified, awareness of the ovarian cancer early warning signs are critical. Promotion of ovarian cancer awareness and early detection underlie the charitable mission of the Mrs. Australia Quest pageant. The pageant’s mission is artfully expressed through its “beautiful awareness” motto.
Although February has come to an end, we had the pleasure of getting to know Veronica Cristovao, a Mrs. Australia Quest Finalist, earlier this month. Because the Mrs. Australia Quest pageant supports ovarian cancer awareness through Ovarian Cancer Australia, we thought it was important to highlight Veronica’s ovarian cancer advocacy and participation in the pageant. After reading Veronica’s story, you will discover what we already know; win, lose or draw in the final pageant competition, Veronica is already a winner given her amazing talents as an entrepreneur, ovarian cancer advocate, wife, and mother of two young children.
We would like to extend our fullest appreciation to Veronica and her family for allowing us to tell her ovarian cancer advocacy story.
“Character contributes to beauty. It fortifies a woman as her youth fades. A mode of conduct, a standard of courage, discipline, fortitude, and integrity can do a great deal to make a woman beautiful.”
— Jacqueline Bisset, English Actress & Golden Globe and Emmy Award Nominee
Mrs. Australia Quest Pageant
The Mrs. Australia Quest pageant selected Ovarian Cancer Australia as its designated 2011 charity. Ovarian Cancer Australia was founded by individuals directly affected by ovarian cancer, who wanted to raise awareness of the disease and support those who have been affected by it. This founder group includes:
Nicole Livingstone, a retired Australian swimmer and Olympic medal winner, television sports commentator and radio presenter, and recipient of the Order of Australia Metal, and her sister Karen, who lost their mother and aunt to the disease;
Simon Lee, whose wife Sheila was the driving force behind the Australian ovarian cancer awareness movement prior to her death in 2001;
Actress and comedian Lynda Gibson, who was diagnosed with ovarian cancer in 2000 and subsequently lost her battle to the disease in 2004; and
Journalist Tracey Curro, whose mother died from ovarian cancer.
Ovarian Cancer Australia is the country’s only national not-for-profit organization which (i) supports women with ovarian cancer, their families, friends and caretakers with compassionate support programs and practical resources; (ii) educates communities and individuals about the disease to increase their awareness of symptoms and the latest treatment, research and clinical trials from across Australia; and (iii) advocates to improve outcomes, treatment and quality of life for women with ovarian cancer. In 2011, Ovarian Cancer Australia will be celebrating its 10th anniversary.
In support of Ovarian Cancer Australia, the Mrs. Australia Quest pageant is promoting awareness of the early signs and symptoms of ovarian cancer in an attempt to educate the women of Australia and beyond. The overarching goal is to save as many women’s lives as possible.
All Mrs. Australia Quest pageant entrants receive the opportunity to promote themselves, voice their opinions, get involved, network, fulfill personal goals, and most of all to have fun. Moreover, the experience at the Mrs. Australia Quest National Final, which will be held in Sydney during June 2011, promises to be very glamorous and entertaining for all of the women who participate. All participants will be judged based upon the following criteria: personal interview & Q&A submission, photographic session, Evening Attire Competition, Swimwear Competition, Active Wear Competition, promotion of ovarian cancer awareness, and internet popularity voting. Undoubtedly, the Mrs. Australia Quest National Final title winner will experience a life changing event that will open new doors of opportunity and create memorable moments.
The Mrs. Australia Quest national winner will go on to compete in the Mrs. International® pageant which will be held in Chicago, Illinois during July 2011. In this pageant, each contestant has the opportunity to select a platform of her choice, which she will spend the next year promoting. Husbands also play a direct role in this event. Each husband will escort his wife in the Evening Gown competition, and the Mrs. International® pageant winner’s husband will crown his wife as the new titleholder.
Veronica Cristovao – Mrs. Australia Quest Finalist
The Mrs. Australia Quest pageant not only raises money for ovarian cancer, it also raises the profile of the disease by creating ambassadors of young wives in Australia. The pageant’s charitable ovarian cancer awareness mission is what motivated Veronica Cristovao to take part in the 2011 competition.
The Cristovao family celebrates Thomas' 3rd birthday. (Above: Duarte & Veronica Cristovao with their two children; Thomas, a 3-year old boy, and Samantha, an 18-month old girl)
Veronica is 33 years old and is married to her husband Duarte, who is property developer. The couple has two children; Thomas, a 3-year old boy, and Samantha, an 18-month old girl.
After experiencing the effects of cancer so close to home, Veronica knows all too well the importance of awareness. Veronica’s family relatives have been affected by cancer of the stomach and the breast, as well as lymphoma.
Veronica completed her formal education with a major in Business/Marketing and Computer Science, although she started her work career in the areas of customer service, management and training. Despite that fact, her life-long passion has always been real estate. In fact, before having children, Veronica worked as a real estate agent. She also engaged in part-time modeling and commercials, and met many interesting people along the way.
While pregnant with her first child (Thomas), Veronica studied interior design and decoration. Given her husband’s real estate development expertise, Veronica believed that a background in interior design and decoration would allow her to work side-by-side with Duarte, thereby allowing the couple to share a common passion. Veronica has already completed four major interior design/decoration projects, while raising her young children at the same time. And, her business and marketing background has proved quite helpful in recruiting new clients for her rapidly growing business, which include her brother who happens to be an architect.
Veronica has always been engaged in charitable activities throughout her life, including blood donation and volunteer activities in support of local charitable organizations and children in need. While working and raising a family, Veronica has also been active in raising ovarian cancer awareness. She dedicates a great deal of time to distributing ovarian cancer awareness posters and informational pamphlets within her local community. By all accounts, Veronica’s ovarian cancer awareness campaign has been extremely well received by her community.
This past month, Veronica utilized an Ovarian Cancer Australia awareness campaign called, “Afternoon Teal™.” Through this campaign, Ovarian Cancer Australia invites all Australians to support women diagnosed with ovarian cancer and their families by hosting an Afternoon Teal™ during the month of February. This gathering allows a host, such as Veronica, to invite workmates, friends, and family members to the event with the goal of (i) raising funds to support programs for women touched by ovarian cancer and their families; and (ii) providing vital information regarding the early warning signs and symptoms of ovarian cancer. Veronica hosted several successful Afternoon Teal™ events, thereby raising much needed monies for ovarian cancer awareness.
“Beauty is how you feel inside, and it reflects in your eyes. It is not something physical.”
— Sophia Loren, Italian Film Actress & 1962 “Best Actress” Academy Award (Oscar) Winner
During a recent interview with a local Australian news reporter, Veronica said: “Cancer is a horrible disease. I feel so fortunate that I am happy and healthy, I want to take this opportunity to give something back.” Veronica believes that learning to “give back” is a critical life lesson for her children, which is best taught by example. “I want my children to understand how important it is to help people in need. I want them to know just how lucky we are.”
In the Mrs. Australia Quest pageant final to be held in June, Veronica will compete with seven other wives for the opportunity to represent Australia at an international level. Veronica believes that winning the national title in June will give her the requisite international platform to raise awareness about the devastating effects of ovarian cancer. Veronica would also like to note that ovarian cancer is preventable through various means, but as with any cancer, recognizing the early warning signs and symptoms is vital. Because there is no reliable blood test to detect early stage ovarian cancer, Veronica looks forward to the day when such a test is readily available at all Australian medical centers.
As noted above, Veronica has already taken it upon herself to campaign hard for ovarian cancer awareness. That hard work has already resulted in her receipt of approximately 7,500 online votes, which represent 10 percent of the final judging score to determine the next Mrs. Australia Quest. We should note that 50% of monies raised through online voting support Ovarian Cancer Australia.
If you would like to vote for Veronica online, please visit http://www.mrsaustraliaquest.com.au/ and click on the “View Finalists” tab, which is located on the left margin of the Mrs. Australia Quest homepage. All individual donors who vote $100 (AUD) or more will be acknowledged on the Mrs. Australia Quest website. Three business voting packages are also available, which provide an even higher level of donor acknowledgment.
We would like to thank the Cristovao family again for helping us in the preparation of this story, and we wish Veronica all the best with respect to the Mrs. Australia Quest pageant final competition in June 2011. In our humble opinion, Veronica is already a winner and an inspirational ovarian cancer advocate.
*“Vox Populi,” a Latin phrase that means “voice of the people,” is a term often used in broadcast journalism to describe an interview of the “man (or woman) on the street.”
In the spirit of Vox Populi, Libby’s H*O*P*E*™ searches online for original writings and visual media created by ovarian cancer survivors, survivors’ family members, cancer advocates, journalists, and health care professionals, which address one or more aspects of ovarian cancer within the context of daily life. The written and visual media features that we discover run the gamut; sometimes poignant, sometimes educational, sometimes touching, sometimes comedic, but always honest. The Vox Populi feature may take the form of an essay, editorial, poem, letter, story, song or video picture montage.
It is our hope that the Vox Populi feature will allow our readers to obtain, in some small way, a better understanding of how ovarian cancer impacts the life of a woman diagnosed with the disease and her family. We invite all readers to submit, or bring to our attention, original writings and visual media suitable for publication as Vox Populi features.
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.
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!
The National Ovarian Cancer Coalition (NOCC) Central Maryland Chapter announces its 6th Annual “Walk to Break the Silence on Ovarian Cancer” to be held on Sunday, September 12, 2010 at Quiet Waters Park, located in Annapolis, Maryland.
Pureology is the Premier Sponsor of the NOCC 6th Annual "Walk To Break The Silence On Ovarian Cancer" Event
Registration will open at 8:00 am, and the 5K Run will begin at 9:00 am. The 3K Walk is scheduled to kick off at 9:05 am. To view a complete schedule of events, click here. To view the event brochure, click here.
September is Ovarian Cancer and Gynecologic Cancer Awareness Month. “We walk and run to raise funds but just as importantly, we walk and run to raise awareness,” said Nancy Long, NOCC Central Maryland Chapter’s Co-President. “There is no early detection test for ovarian cancer. That is why education and awareness are currently our best defense against this disease.”
Special events will include a survivor’s area with prizes and gifts available for ovarian cancer survivors. Refreshments will be provided, as well as face painting for the kids, big and small, and a table to make a flag in honor of or in memory of a loved one.
Quiet Waters Park - South River Overlook, Annapolis, Maryland
Quiet Waters Park - Bridge & Fountain, Annapolis, Maryland
More than 20,000 women are diagnosed with ovarian cancer each year, and approximately 15,000 women die from the disease annually. Unfortunately, most cases are diagnosed in their later stages when the prognosis is poor. However, if diagnosed and treated early, when the cancer is confined to the ovary, the five-year survival rate is over 90 percent. There is currently no early detection test for ovarian cancer, and Pap tests do not detect the disease. That is why it is imperative that the early signs and symptoms of the disease are recognized, not only by women, but also by their families and the medical community.
Symptoms of ovarian cancer may include bloating, pelvic or abdominal pain, trouble eating or feeling full quickly, and feeling the need to urinate urgently or often. Other symptoms of ovarian cancer may include fatigue, upset stomach or heartburn, back pain, pain during intercourse, constipation, and menstrual changes. Women who experience these symptoms for longer than two weeks, especially if these symptoms are new to them, are encouraged to visit their health care provider.
Many women attending this event are anxious and willing to tell their stories of, or related to, diagnosis, misdiagnosis, the hardships of treatment, the potential for inherited genetic mutations, and the fears and joys of being a survivor.
To register for the NOCC Central Maryland Chapter’s “Walk to Break the Silence on Ovarian Cancer,” please call 443-433-2597 or visit www.nocc.kintera.org/mdcentral
About the National Ovarian Cancer Coalition
The mission of the National Ovarian Cancer Coalition, a 501 (c)(3) charitable organization, is to raise awareness and promote education about ovarian cancer. The Coalition carries out its mission through a toll-free Help Line, local NOCC Chapters, a comprehensive website, peer support, written publications, and awareness/educational programs. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer. If you would like more information on the “Break the Silence” campaign, or wish to contact one of the local NOCC Chapters, visit www.ovarian.org or call 1-888-OVARIAN (1-888-682-7426).
On March 20, 2010, the National Ovarian Cancer Coalition (Maryland Chapter) will hold its 6th Annual Women’s Health Expo entitled, REJUVENATE Finding Balance (NOCC Rejuvenate), at the Sheraton Annapolis Hotel. … On behalf of Libby’s H*O*P*E*™, I will conduct a seminar as part of Session II entitled, A Patient Advocate’s Perspective on the Importance of Ovarian Cancer Awareness and Related On-line Resources.
NOCC Rejuvenate is designed to appeal to all women who want to rejuvenate their mind, body and spirit. The event is divided into three sessions. Each session offers seven to eight different seminars for attendees. The seminars address a variety of topics including make-up and skin care, going green, photography, plastic surgery, decorating, fashion, finance, retirement solutions, nutrition, fitness, and holistic approaches to wellness. A list of all event seminars is provided below.
Informative seminars about ovarian and breast cancer are offered as part of each session. Knowing the signs and symptoms of ovarian cancer, the screening guidelines for breast cancer, and the basics about hereditary breast and ovarian cancer, could save your life or the life of someone you love. On behalf of Libby’s H*O*P*E*™, I will conduct a seminar as part of Session II entitled, A Patient Advocate’s Perspective on the Importance of Ovarian Cancer Awareness and Related On-line Resources. My presentation will address the genesis of the Libby’s H*O*P*E*™ website; highlight critical ovarian cancer awareness information; summarize available online ovarian cancer and cancer-related resources; describe stories of hope involving ovarian cancer survivors and their families; and explain how each individual can make a difference in the fight against ovarian cancer.
NOCC Rejuvenate also targets cancer survivors. The devastating effects of these diseases can rob women of hope and peace. This event will offer an opportunity for survivors to reinvent their self-image and gain more knowledge, offering a sense of hope and a chance to connect with other survivors.
An exhibitor’s area will be offered at the event. This area will include informational tables as well as vendor tables that have been specifically chosen to meet the overarching vision of the event. At the completion of the three event sessions, a nutritious lunch will be served while information is provided on the signs and symptoms of ovarian and breast cancer.
NOCC 6th Annual Women's Health Expo
What: National Ovarian Cancer Coalition 6th Annual Women’s Health Expo entitled, REJUVENTE Finding Balance (click here to view event brochure, including mail-in registration)
When: Saturday, March 20, 2010 (8:00 A.M. – 3:00 P.M.)
Hereditary Syndromes That Include Ovarian and Breast Cancers
Facial & Body Rejuvenation
A Patient Advocate’s Perspective On the Importance of Ovarian Cancer Awareness & Related On-line Resources (Paul Cacciatore, Founder, Libby’s H*O*P*E*™)
Designing Green Interiors
Creating Better Images with the Camera You Own
Some Expert Fashion Tips
Yoga: A Balanced Life
Relaxation & Healing
Session III Presentations (12:00 P.M. – 1:00 P.M.)
What is My Daughter’s Chance of Getting My Cancer?
Planning for your Retirement Lifestyle: The New Retirement
Super Health Begins with Super-food Nutrition
Around the World to Your Backyard
Balancing Your Life Wheel
Get Fit & Healthy with the Simple Rules of the Big 3
Relaxation & Healing
About the National Ovarian Cancer Coalition
The mission of the NOCC is to raise awareness and increase 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. NOCC programs are possible only with the help of its volunteers; committed men and women dedicated to the mission of the NOCC in communities across the country. For more information go to http://www.ovarian.org/.
About the National Breast & Ovarian Cancer Connection
The mission of the NBOCC is to raise awareness and educate the general public about the link between breast and ovarian cancer. The organization is dedicated to teaching all women about their inherent risks and how to improve their chances of survival through early detection and research developments. For more information go to http://www.nbocc.org/.
L’Oréal Paris Honors Women of Worth at Special Ceremony in New York City. Ten Women Recognized for Making a Difference in their Communities with Special Guests including Mary J. Blige, Holly Robinson Peete and Erica Hill. Shannon Lambert Named Women of Worth National Honoree by Public Vote
L'Oréal Paris' 2009 Women of Worth Honorees with Mary J. Blige, L'Oréal Paris President Karen T. Fondu and Senior Vice President of Marketing Anne Talley at the CNN Inspire Summit.
L'Oréal Paris President, Karen T. Fondu, with Mary J. Blige at the CNN Inspire Summit in New York City.
L’Oréal Paris’ fourth annual Women of Worth program honored ten women for their exceptional achievements and tireless volunteerism efforts at the CNN Inspire Summit in New York City. The event was held December 8th in celebration of the ten 2009 L’Oréal Paris Women of Worth honorees and featured an awards presentation by Karen T. Fondu, President, L’Oréal Paris Division. Special guests speakers included, Mary J. Blige, Holly Robinson Peete, and Erica Hill. The Women of Worth honorees represent a wide range of causes including education, female and youth empowerment, military support and healing for survivors of cancer and sexual violence. Each of the ten honorees received $5,000 from L’Oréal Paris for their charitable organizations, plus a $5,000 matching donation made in their name to the Ovarian Cancer Research Fund, the twelve-year charitable partner of L’Oréal Paris.
Women of Worth Program
The Women of Worth initiative celebrates women who passionately embody the spirit of volunteerism. The initiative empowers and celebrates women everywhere and brings the L’Oréal Paris “Because I’m Worth It” philosophy to life.
“We are so honored to welcome each of the 2009 Women of Worth honorees to this very special community,” said Karen T. Fondu, President, L’Oréal Paris Division. “Each of these amazing women embodies the L’Oréal Paris philosophy and supports our unwavering belief in every woman’s worth and in her power to make a difference in the world.”
Women of Worth Honorees
The ten 2009 L’Oréal Paris Women of Worth honorees are dedicated to a range of causes and are phenomenal examples of the power of volunteerism. Each honoree is an extraordinary community leader representing and inspiring women all across America.
Lillian Collins – Clinton, OK, founded Eastside Academy to assist African American children who need help in reading and math, providing a positive after-school program.
Anne Ginther – Sammamish, WA, founded RandomKid, which provides staff and services to youth of all backgrounds and abilities for the development, management and accomplishment of their goals to help others.
Maimah Karmo – Aldie, VA, established Tigerlily Foundation, which provides meals, financial assistance, empowerment and inspiration to younger women affected by breast cancer.
Shannon Lambert, Minneapolis, MN, founder of Pandora’s Project, a community where women who have survived rape can connect and support one another.
Brenda Murray – Chevy Chase, MD, has been transforming conditions and providing educational opportunities for thousands of women behind bars for the past 20 years.
Ora Rakestraw – Sacramento, CA, tutors third graders with special needs, helping these young people have a chance to experience success and stay committed to their education.
Carol Reza – Whitter, CA, founded Bridge of Faith to provide families of incarcerated women with mentoring and social service referral services.
Halle Tecco – San Francisco, CA, created Yoga Bear, an organization that provides free yoga classes to cancer patients.
Rhonda Ulmer – Denton, MD, provides local community resources to parents in her school to obtain their GED, housing, food and health assistance, transforming the school into the hub of the community.
The Women of Worth honorees were chosen from nearly 2,500 applicants by an elite group of judges, which includes Jacqueline Hernandez, Chief Operating Officer of Telemundo Communications Group; Soledad O’Brien, CNN Anchor; Dayle Haddon, L’Oréal Paris spokesperson; Elizabeth Howard, former Chief Executive Officer of the Ovarian Cancer Research Fund; Cindy Kerr, Founder and President of ConKerr Cancer and Anne Talley, Senior Vice President of Marketing for L’Oréal Paris.
Women of Worth National Honoree
Shannon Lambert, founder of Pandora’s Project, a community where women who have survived rape can connect and support one another.
The National Honoree, Shannon Lambert, recognized for her work with Pandora’s Project, which provides support, information and resources to sexual violence survivors received an additional $25,000 from L’Oréal Paris as a result of a national online vote at womenofworth.com.
“My own experience inspired me to create an innovative way for survivors of sexual violence to connect with each other and find the resources they need and deserve to heal.” — Shannon Lambert
It is estimated that at least one in six individuals will experience rape or sexual abuse in their lifetime, and for many, the aftermath of sexual violence is isolating and devastating. Pandora’s Project offers an online resource moderated by a team of volunteers that provides peer-to-peer support for male and female victims of sexual violence. The organization also operates a free sexual assault lending library, maintains resource lists for those in need of face-to-face support, and organizes retreat weekends for women ready to take their healing one step farther.
“I am delighted to be honored as a L’Oréal Paris Woman of Worth,” said Lambert. “The support L’Oréal Paris has given to Pandora’s Project will enable us to continue to help victims of sexual violence and to support their recovery.”
For more information about the Women of Worth program and honorees, please visit womenofworth.com.
About L’Oréal Paris
The L’Oréal Paris division of L’Oréal USA, Inc. is a total beauty care company that combines the latest in technology with the highest in quality for the ultimate in luxury beauty at mass. The L’Oréal Paris brand encompasses the four major beauty categories – haircolor, haircare, skincare and cosmetics – and includes such well-known brands as Preference, Excellence and Féria haircolors; EverPure, VIVE Pro, Studio Line and L’Oréal Kids haircare; Revitalift, Age Perfect, Skin Genesis, Collagen, Sublime Bronze and Men’s Expert skincare; and the Colour Riche, True Match, Infallible, Bare Naturale and HIP High Intensity Pigments cosmetics collections, along with a portfolio of mascara including Voluminous, Double Extend and Telescopic among many others.
L’Oréal Paris is dedicated to women around the world and the company has been inspired to give back and make a difference in their lives. In 1997, L’Oréal Paris made a long-term commitment to raising awareness for ovarian cancer, which continues to build. To date, L’Oréal Paris has helped raise over $18 million dollars to further research and build awareness with fundraising efforts such as the L’Oréal Legends Gala and L’Oréal’s annual “Color of Hope” cosmetics collection.
Yesterday, U.S. President Barack Obama designated September 2009 as National Ovarian Cancer Awareness Month. National Ovarian Cancer Awareness Month helps educate women and men about the importance of knowing the early warning signs and symptoms of the disease, scheduling routine doctor visits, and continuing robust scientific research.
Yesterday, U.S. President Barack Obama designated September 2009 as National Ovarian Cancer Awareness Month. The official proclamation issued by the White House is set forth below. National Ovarian Cancer Awareness Month helps educate women and men about the importance of knowing the early warning signs and symptoms, scheduling routine doctor visits, and continuing robust scientific research.
Ovarian cancer remains the leading cause of death from gynecologic cancer among women in the United States. Every year, thousands are diagnosed and go on to fight the disease with grace and dignity. National Ovarian Cancer Awareness Month honors all those affected by this cancer and renews our commitment to fighting an illness that takes the lives of too many in our Nation.
Women are often diagnosed with ovarian cancer when it is already at an advanced stage. This problem can be attributed to a lack of effective early detection technologies and minimal or no specific symptoms associated with the disease. By learning more about risk factors and maintaining regular physician consultations, women have their best chance of early detection of ovarian cancer.
Science continues to expand our knowledge about this illness, promising hope to those who, years ago, would be without it. Through dedicated research, treatment outcomes have improved for many, and we are building a foundation for the development of evidence-based screening, which can help diagnose the disease at the earliest possible stage when the likelihood of cure is high.
This month we recommit to supporting the women who continue to battle valiantly against this malady as well as all families who are affected. National Ovarian Cancer Awareness Month helps educate women and men about the importance of knowing common signs and symptoms, scheduling routine doctor visits, and continuing robust scientific research. As a Nation, we are united in our resolve to reduce incidence and improve the lives of all those affected.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and laws of the United States, do hereby proclaim September 2009 as National Ovarian Cancer Awareness Month. I encourage citizens, Government agencies, private businesses, nonprofit organizations, and other interested groups to join in activities that will increase awareness of what Americans can do to prevent and control ovarian cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of August, in the year of our Lord two thousand nine, and of the Independence of the United States of America the two hundred and thirty-fourth.
One year ago today, you left us after an extended battle with ovarian cancer. You are missed as a wife, a daughter, a sister, an aunt and a cousin. You were, and continue to be, a very special family member to your loved ones who remain behind. You battled this insidious disease with courage but lost that battle in the prime of your life at age 26.
I wonder why your life was cut short by this disease.
I wonder why an effective screening test has not been discovered by a country that set a lofty goal of landing a man on the moon and accomplished that goal within a decade.
I wonder why there are so many pink ribbons yet so few teal ribbons.
I wonder how the mothers of a major Hollywood celebrity (Angelina Jolie) and the President of the U.S. (Barack Obama) could die from ovarian cancer, yet U.S. women remain generally unaware of the early warning signs and symptoms of the disease.
I have faith that you are in a much better place now. A place that only knows pure love. A place that knows no pain or suffering. A place where there are logical answers to my questions above.
I remember when you rode in my new red convertible sports car at the age of 11 with your blond hair blowing behind you in the wind. At that moment, your life seemed limitless.
I remember when, as a young adult, you helped others who could not help themselves. You chose generosity and kindness while many of your peers sought money and power.
I remember your positive attitude after initial diagnosis, despite the fact that you had every reason to blame life and others for your plight.
I remember your dry sense of humor after a doctor attempted to soften the blow of a disease recurrence diagnosis by telling you that even he could step out into the street tomorrow and get hit by a bus. You suggested that the doctor needed serious help with his “people skills,” but joked that his insensitive statement should appear on an ovarian cancer fundraising T-shirt.
I remember how you continued to seek out medical solutions to your disease in the face of dire odds and statistics.
I remember “hearing” your smile on the telephone, regardless of our 3,000 mile separation.
I will always remember your example of love, faith, hope, courage, persistence, and ultimately, acceptance.
On July 28, 2008, I wrote about two songs that immediately came to mind after I heard about your passing. One year later, two songs again come to mind based upon your inspiration and memory.
The first song is I’ll Be Missing You.
I’ll Be Missing You was written by Terry “Sauce Money” Carroll and performed by Sean “Diddy” Combs (then Puff Daddy), Faith Evans and 112. Terry Carroll received a 1997 Grammy Award for the song that is based in part upon the melody of the 1983 Grammy Award-Winning song Every Breath You Take(written by Sting and performed by The Police). I’ll Be MissingYou was inspired by the memory of Combs’ fellow Bad Boy Records artist Christopher Wallace (aka Notorious B.I.G. ) who died in March 1997. The song lyrics express what our family is feeling today when we think of you:
… Life ain’t always what it seem to be
Words can’t express what you mean to me
Even though you’re gone, we still a team
Through your family, I’ll fulfill your dream
In the future, can’t wait to see
If you open up the gates for me
Reminisce sometime
The night they took my friend
Try to black it out but it plays again
When it’s real feelings’ hard to conceal
Can’t imagine all the pain I feel
Give anything to hear half your breath
I know you still livin’ your life after death
… It’s kinda hard with you not around
Know you in heaven smilin down
Watchin us while we pray for you
Every day we pray for you
Til the day we meet again
In my heart is where I’ll keep you friend
Memories give me the strength I need to proceed
Strength I need to believe …
I still can’t believe you’re gone
Give anything to hear half your breath
I know you still living you’re life, after death …
Eva Cassidy, like you, died in the prime of her life from cancer. Eva was 33 years old when she died in 1996 from melanoma, the deadliest form of skin cancer. During her life, she created and sung beautiful music in relative obscurity. After her death, millions of worldwide fans “discovered” her music and today celebrate her life. The lyrics of this classic ballad celebrate our belief that you are now at peace in a beautiful place “somewhere over the rainbow,” along with the hope that we will one day be reunited with you:
Somewhere over the rainbow
Way up high
There’s a land that I heard of
Once in a lullaby
Some day I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemondrops
Away above the chimney tops
That’s where you’ll find me
Somewhere over the rainbow
Bluebirds fly
Birds fly over the rainbow
Why then, oh why can’t I?
In Mitch Albom’s bestselling memoir Tuesdays With Morrie, Morrie Schwartz, who was suffering from terminal Lou Gehrig’s Disease,taught Albom (his former college student) an important lesson about how death reminds us to live fully each day with love. “As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away,” he told Albom one Tuesday. “All the love you created is still there. All the memories are still there. You live on in the hearts of everyone you have touched and nurtured while you were here. Death ends a life, not a relationship.”
Libby, your memory, love, and inspiration live on in our hearts and minds. Your physical life ended one year ago, but your relationship with us is eternal. We will forever love you.
Libby Remick (1982 - 2008) "Grieve not, nor speak of me with tears, but laugh and talk of me as if I were beside you there." -- Isla Paschal Richardson
I am requesting family members and readers to honor Libby by contributing at least $1.00 to ovarian cancer research via the Ovarian Cancer Research Fund (and PayPal). To make a contribution, click on Kelly Ripa’s picture located on the left homepage sidebar, or simply CLICK HERE.
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Ovarian cancer causes more deaths than any other cancer of the female reproductive system.
In 2009, the American Cancer Society (ACS) estimates that there will be approximately 21,550 new ovarian cancer cases diagnosed in the U.S. ACS estimates that 14,600 U.S. women will die from the disease, or about 40 women per day.
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.
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. A Pap smear cannot detect 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.
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%.
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*”Vox Populi,” a Latin phrase that means “voice of the people,” is a term often used in broadcast journalism to describe an interview of a “man on the street.”
In the spirit of Vox Populi, Libby’s H*O*P*E*™ searches online for original pieces of writing created by ovarian cancer survivors, survivors’ family members, cancer advocates, journalists, and health care professionals, which address one or more aspects of ovarian cancer within the context of daily life. The written pieces that we discover run the gamut; sometimes poignant, sometimes educational, sometimes touching, sometimes comedic, but always honest. The written piece may be an essay, editorial, poem, letter, or story about a loved one. In all cases, we have received permission from the writer to publish his or her written piece as a Libby’s H*O*P*E*™ Vox Populi weblog post.
It is our hope that the monthly Vox Populi feature will allow readers to obtain, in some small way, a better understanding of how ovarian cancer impacts the life of a woman diagnosed with the disease and her family. We invite all readers to submit, or bring to our attention, original written pieces suitable for publication as monthly Vox Populi features.
Today, Libby’s H*O*P*E*™ added a new widget to the homepage right sidebar. The widget, provided by SocialVibe.com, allows our sponsor, the TNT Network, to make donations to Stand Up To Cancer, which is our supported cause. Here’s how it works. For each visitor who comes to our website and clicks on the widget to interact with the TNT Network brand, TNT makes a donation on our behalf directly to Stand Up To Cancer. Better yet, it’s all free to Libby’s H*O*P*E*™ and our visitors. It provides you, the visitor, with a way to support cancer research without having to make an actual cash donation.
Today, Libby’s H*O*P*E*™ added a new widget to the homepage right sidebar. The widget, provided by SocialVibe.com, allows our sponsor, the TNT Network, to make donations to Stand Up To Cancer, which is our supported cause. Here’s how it works. For each visitor who comes to our website and clicks on the widget to interact with the TNT Network brand, TNT makes a donation on our behalf directly to Stand Up To Cancer. Better yet, it’s all free to Libby’s H*O*P*E*™ and our visitors. It provides you, the visitor, with a way to support cancer research without having to make an actual cash donation. Please note that Libby’s H*O*P*E*™ does not receive any monetary benefit from SocialVibe or TNT for displaying the widget.
Upon clicking our SocialVibe widget, you will be asked to answer the question “Who’s Your Hero,” and you will be able to view upcoming previews from TNT’s new television series entitled HawthoRNe, which stars Jada Pinkett Smith. Pinkett Smith plays Christina Hawthorne, a compassionate and headstrong Chief Nursing Officer, who leads a group of dedicated nurses at the fictional Richmond Trinity Hospital. Hawthorne is the kind of nurse that you want on your side when you or someone you love is in the hospital. She is the kind of nurse who fights for her patients and does not let them slip through the cracks. When necessary, she takes on doctors and administrators who are overworked, distracted or just unable to see the human being behind the hospital chart.
I chose TNT as the initial Libby’s H*O*P*E*™ sponsor because both of my sisters are dedicated nurses who have spent many years caring for patients being treated in various hospital departments such as the emergency room, operating room, and intensive care unit.
We will change the sponsor from time to time so that our visitors can interact with different brands periodically. We hope that you enjoy interacting with the SocialVibe.com widget while raising money for cancer research.
On May 15, 2009, Craig Broeder Ph.D., FACSM, FNAASO will embark upon a 100-day bike trek that will take him to 32 U.S. cities as part of a 9,000 mile circumnavigation of the U.S. Since July 2008, Craig has been planning this trip to honor his wife, Kay, in her 20th year of surviving clear cell ovarian cancer — a rare and particularly aggressive/chemoresistant form of the disease. During the trip, Craig plans to raise $1 million dollars for ovarian cancer awareness and cancer prevention projects by inspiring one million individuals to contribute $1.00 dollar each. …
When spoken by a doctor, the medical term “N.E.D.” – No Evidence of Disease – is music to the ears of an ovarian cancer survivor. A band of doctors, called “N.E.D.,” wants to be music to the ears of the general public when it comes to raising awareness about women’s cancers. …During the day, this eclectic group of highly skilled physicians perform under the bright lights of the operating room while caring for women who are battling gynecological cancers. By night, these physicians turn into artists who play a mix of rock and alternative rock music to give a voice to the needs, struggles, and triumphs of their cancer patients. … Victor Hugo, the French author of the classic novels Les Misérables and Notre-Dame de Paris (The Hunchback of Notre Dame), once said, “music expresses that which cannot be said and on which it is impossible to be silent.” The band N.E.D. believes in the same principle when it comes to the promotion of gynecologic cancer awareness and education through music. The N.E.D. band members will save many women’s lives throughout their medical careers; however, they could very well save thousands of lives through the educational cancer awareness message brought to light through their music.
Explanation of the N.E.D. Logo: Pink for Breast Cancer, Yellow is the Symbolic Color for Hope, Teal for Gynecologic Cancer; the Remaining Three Colors are Just Complimentary, But There Are Six Colors Total, One for Each Band Member. (Photo Source: Motema Music)
When spoken by a doctor, the medical term “N.E.D.” – No Evidence of Disease – is music to the ears of an ovarian cancer survivor. A band of doctors, called “N.E.D.,” wants to be music to the ears of the general public when it comes to raising awareness about women’s cancers. Yes, you read that correctly, six gynecologic oncologists want to raise awareness about ovarian cancer and other women’s cancers through their music. During the day, this eclectic group of highly skilled physicians perform under the bright lights of the operating room while caring for women who are battling gynecological cancers. By night, these physicians turn into artists who play a mix of rock and alternative rock music to give a voice to the needs, struggles, and triumphs of their cancer patients.
Most of the N.E.D. band members played in musical groups during their youth. Nimesh Nagarsheth’s interest in music relates back to his college days. As a student at the University of Wisconsin, Nagarsheth focused on musical percussion study, but later, due to pragmatism, he refocused his concentration on medicine. “I saw many really talented peers who worked really hard and were not getting jobs as musicians.” “Music has always been a passion of mine, ever since I was a child,” said Nagarsheth,. “But to be honest with you, I didn’t really develop an interest in medicine until I went to college.”
While in medical school in Oregon, John Boggess played in a band with other medical students in the 1980s to earn rent money, and he developed a small following. But, Boggess gave up musical pursuits to practice medicine. Joanie Hope said that she has been musical since she was a child: “When I was in medical school, I wrote lots of songs with medical themes, because medicine is, after all, about people and their troubles. When I was in residency, I didn’t have time to do much with music, but now that I’ve found this band, I’m able to tap into my creative energy again.” John Soper played in high school and college bands, and as an adult was a member of a local bluegrass group called Piney Mountain Boys, which split up in 1989.
Oddly enough, the creation of N.E.D. arose from an immediate need for entertainment at the 2008 annual meeting of the Society of Gynecologic Oncologists (SGO). In short order, the six gynecologic oncologists met and rehearsed in preparation for the gig. Notably, with the exception of John Soper and John Boggess, the band members never met, much less played together. They rehearsed one night, and performed the next. William Winter, a band member, said he and his colleagues were game to play for their peers, but noted that “[n]one of us are known for our music.” As stated in the vernacular by John Soper, the goal “was to not suck.” Despite the band’s hasty creation and short preparation time, the doctors who attended the SGO meeting loved the band’s music and rocked out on Led Zeppelin and Allman Brothers Band songs. The band played the 30 or so classic covers that they rehearsed, and when the large crowd of doctors asked for more, the band performed the same songs again. “People were sticking around,” Winter said. “We didn’t get booed off the stage. We actually got asked to do some encores. We played everything we know. We had to replay songs.” Marsha Wilson, communications director for the Gynecologic Cancer Foundation (GCF), said ” “Everybody went crazy. They were really good.”
After receiving positive feedback for its performance at the 2008 SGO Annual Meeting, N.E.D. went on to perform at the First National Gynecologic Cancer Symposium and played at Arlington National Cemetery in front of the memorial to military women who died in the line of duty. After several more successful gigs, the seeds were planted for a band that would be devoted entirely to raising gynecologic cancer awareness and funding for disease screening, clinical trials, and patient education.
The Band’s Mission of Gynecologic Cancer Awareness & Education
“Do you ever see the words gynecologic oncology in print?” asked John Boggess. Boggess’ comment carries the underlying message that gynecological cancers are often overlooked, and reveals the overarching charitable mission of N.E.D. In a world where “me first” mentality is commonplace, and rock stars drive ultra-luxury sports cars, run with entourages, and make a habit of attending rehab, these multifaceted doctors simply want to raise the general public’s awareness about women’s cancers. “We think that people need to understand about these diseases and the women who have them,” said John Boggess. “So anything that we can do outside of the surgery we do every day in the operating room and in the clinic, we find to be an incredible privilege.”
In 2008, several band members were asked about the future potential of N.E.D. as a vehicle for cancer awareness. At that time, Joanie Hope stated that she wanted a future for the band that would “speak to people” through music. “I want people to listen to us at home so that our music and lyrics reflect what they are feeling if they have cancer, or someone they love does,” said Hope. Nimesh Nagarsheth responded, “I’d like us to make a CD. We could sell them at concerts as a fundraising tool, and we could put educational inserts about women’s cancer inside the case. Joanie [Hope] and I, as the ‘New York division of N.E.D.,’ have already written ten original songs, some with lyrics about cancer …”
Each original song written by the band was inspired by the doctors’ work with women’s cancers. Joanie Hope wrote a song entitled, “Rhythm Heals,” which is intended to inspire her patients. “It encompasses what we’re all about,” said Hope. “There are many ways to heal beyond what we do as doctors. My patients teach me that all the time.” Nimesh Nagarsheth wrote the song “Third-Person Reality” to address a doctor’s struggle to help patients dealing with cancer diagnoses. “It’s tempting to remove yourself from the situation and be like a third person,” said Nagarsheth, “but we have to overcome that because our patients need us.” The hard-rocking track “False Pretenses,” written by William Winter and sung by John Boggess, urges genuine communication when time is short due to a patient’s dire diagnosis.
Motéma Music & The Gynecologic Cancer Foundation Take Interest
Meet The Band: (Bottom Row) John Boggess; (Center Row, left to right) Nimesh Nagarsheth, Joanie Hope, William Winter, William (Rusty) Robinson; (Top Row) John Soper. (Photo Source: N.E.D. Facebook Page)
The 2008 comments made by Joanie Hope and Nimesh Nagarsheth in regard to N.E.D.’s future were indeed prophetic. Shortly thereafter, the band landed a record deal with Motéma Music, a New York record label that features world music and jazz musicians. Motéma artist K.J. Denhert is currently working with the band as a performance and songwriting coach. Mario McNulty, who has worked with David Bowie, Linkin’ Park and other classic rock bands, will produce the band’s first album.
N.E.D.’s first album is set for release in November 2009 during Gynecologic Cancer Month. Although the band wants to appeal to cancer patients and their families, William Winter said that they also want to reach others who may not be aware of the other types of cancers that afflict women. Winter’s hope is to “market it to anyone and everyone . . . and have them understand what goes on with women’s cancers, and the pain behind these things and what women feel and what cancer patients feel and go through.”
N.E.D. also receives support from the GCF. GCF believes that N.E.D.’s efforts are consistent with its charitable and educational mission. In fact, the band will be featured as part of a GCF national campaign, the Gynecologic Cancer Awareness Movement, which is scheduled to kick off in November 2009 in Washington D.C. Although the band has received support from GCF, additional monies are needed to fund the band’s CD recording and post-production costs. GCF is accepting donations and soliciting funds to support the production of the band’s first CD. Any future proceeds from the sale of the CD and live performances will be donated to the Gynecologic Cancer Foundation (GCF) whose mission is to educate the public about gynecologic cancers and support promising research. You can help by making a donation to the GCF (marked with a designation for “N.E.D.”) through one of the methods provided below.
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Online Contribution (Through the Network for Good):
Mail your tax deductible contribution to:
The Gynecologic Cancer Foundation
230 W. Monroe, Suite 2528
Chicago, Il. 60606-4703 CLICK HERE for a donation form (Microsoft Word Document) to mail in with your contribution.
By Telephone:
Call GCF at 312-578-1439 and donate with a credit card
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In addition to landing the Motéma record contract, N.E.D. has been invited to appear on “The Bonnie Hunt Show,” and is in discussions with CBS and ABC with respect to potential appearances on “The Early Show” and “Good Morning America,” respectively. Also, the band hopes to obtain an audience with Oprah Winfrey.
Their Medical Skills Save Many; Their Music Could Save Thousands
The importance of N.E.D. and its mission to raise women’s cancer awareness is best understood through the eyes of a gynecologic cancer patient. Samantha Hill, one of Nimesh Nagarsheth’s patients, was diagnosed with ovarian cancer at a young age. Samantha says that when she learned that her doctor played in a rock band, she was not surprised. Hill emphasized that it is her greatest hope that N.E.D.’s message gets across to the general public. “You’re 35 years old and you hear that you have cancer, and you’re in shock,” she recalls. “I felt that he [Nagarsheth] could relate and I think music is a very important tool. And I think that specifically, ovarian cancer, there’s not much awareness and it’s really a silent killer.”
Victor Hugo, the French author of the classic novels Les Misérables and Notre-Dame de Paris (The Hunchback of Notre Dame), once said, “music expresses that which cannot be said and on which it is impossible to be silent.” The band N.E.D. believes in the same principle when it comes to promotion of gynecologic cancer awareness and education through music. The N.E.D. band members will save many women’s lives throughout their medical careers; however, they could very well save thousands of lives through the educational cancer awareness message brought to light through their music.
N.E.D. Band Rehearsal 1, December 7, 2008 (Motema artist KJ Denhert working with the band)
About Gynecologic Cancers & Gynecologic Oncologists
Gynecologic cancers originate in the female reproductive organs, including the cervix, ovaries, uterus, fallopian tubes, vagina and vulva. Every woman is at risk for developing a gynecologic cancer. It is estimated that there were approximately 78,000 new cases diagnosed, and approximately 28,000 deaths, from gynecologic cancers in the United States during 2008.
Gynecologic oncologists are physicians committed to the comprehensive treatment of women with cancer. After completing four years of medical school and four years of residency in obstetrics and gynecology, these physicians pursue an additional three to four years of training in gynecologic oncology through a rigorous fellowship program overseen by the American Board of Obstetrics and Gynecology. Gynecologic oncologists are not only trained to be skilled surgeons capable of performing wide-ranging cancer operations, but they are also trained in prescribing the appropriate chemotherapy for those conditions and/or radiation therapy when indicated. Frequently, gynecologic oncologists are involved in research studies and clinical trials that are aimed at finding more effective and less toxic treatments to further advance the field and improve cure rates. Studies on outcomes from gynecologic cancers, especially ovarian cancer, demonstrate that women treated by a gynecologic oncologist have a better likelihood of prolonged survival compared to care rendered by non-specialists. Due to their extensive training and expertise, gynecologic oncologists often serve as the “team captain” who coordinates all aspects of a woman’s cancer care and recovery. Gynecologic oncologists understand the impact of cancer and its treatments on all aspects of women’s lives, including future childbearing, sexuality, physical and emotional well-being, and the impact cancer can have on the patient’s whole family. But, there are only about 1,000 board-certified gynecologic oncologists in the United States. Women may need to ask their primary care provider for referral to a gynecologic oncologist if a gynecologic cancer is suspected because not all physicians are aware of the practice scope of modern gynecologic oncologists. Women can find a gynecologic oncologist by going online to www.wcn.org and clicking on the find a doctor button. This simple step may be the first stride forward to long-term survivorship and cure. It’s important to start gynecologic cancer care with the right team and a winning game plan.
About the Gynecologic Cancer Foundation
The Gynecologic Cancer Foundation (GCF) is a 501(c)(3) not-for-profit organization whose mission is to ensure public awareness of gynecologic cancer prevention, early diagnosis and proper treatment. In addition, GCF supports research and training related to gynecologic cancers. GCF advances this mission by increasing public and private funds that aid in the development and implementation of programs to meet these goals. For more information about GCF, its educational materials or research grants, please visit www.thegcf.org or contact GCF Headquarters by phone at 312-578-1439 or by e-mail at info@thegcf.org. For additional information on gynecologic cancers or a referral to a gynecologic oncologist or a related specialist, please call the toll-free GCF Information Hotline at 800-444-4441. For more information about women’s cancers, visit GCF’s Women’s Cancer Network Web site: www.wcn.org. Log on for a confidential risk assessment to learn about your risk for developing gynecologic and breast cancers. Comprehensive information about each gynecologic cancer and breast cancer is available on the site. The site also provides the opportunity to locate a nearby gynecologic oncologist, a step women are urged to take if they suspect or have been diagnosed with a gynecologic cancer.
Meghan Redenbach is an 8th grader who is battling a rare form of ovarian cancer. (Source: WGRZ News, Buffalo, NY)
On February 26, 2009, Libby’s H*O*P*E*™ posted a story about Meghan Redenbach. As you may recall, Meghan Redenbach , 13 years old, was diagnosed in December 2008 with a rare form of ovarian cancer known as “fibrosarcoma.” This form of ovarian cancer is so rare that there are only 30 documented cases in the U.S. Meghan is only the second child to be diagnosed with fibrosarcoma.
Today, we were thrilled that WGRZ News, located in Buffalo, New York, also reported on Meghan’s story. If you are interested in watching the 5 minute video news story created by WGRZ’s Matt Pearl, CLICK HERE.
Donations are being accepted to help with Meghan’s mounting medical expenses. Donations can either be mailed to: Meghan’s Fund c/o First Niagara Bank, 5737 South Transit Road, Lockport, New York 14094, or you can make an on-line donation by credit card or through your Pay-Pal account by clicking on the “Make A Donation” tab at www.meghansfund.org.
GASPORT, NY: Strong Show of Support –Rare Cancer Not Getting Girl Down
Meghan Redenbach, 13 yr. old honor student & athlete, has a rare form of ovarian cancer known as "fibrosarcoma." There are only 30 documented cases of this cancer diagnosed in the U.S. It is believed that Meghan is only the second child ever diagnosed. Click on Meghan's picture to contribute to Meghan's Fund.
GASPORT – Meghan Redenbach, 13 [year old], honor student and athlete, has a rare form of ovarian cancer, fibrosarcoma.
There are only 30 documented cases of this cancer diagnosed in the United States, according to the family, and the daughter of Michael and Cathy Redenbach is only the second child ever diagnosed.
The family needs help with mounting expenses, and reaction in the community has been overwhelming. Neighbors and businesses have taken note. Meghan’s Fund was established by the Rainbow of Health, and Royalton neighbors plan a fundraiser March 8 at Terry’s Corner Fire Hall.
Treatment for Meghan’s cancer began after Christmas at Roswell Park [Cancer Institute]. She goes to Roswell every three weeks and stays overnight for therapy Friday, Saturday and Sunday. She will come home Monday, depending on how she feels.
‘I’m doing great, actually,’ she said this week.
A Chinese auction, raffles and children’s activities are planned. Hamburgers, hot dogs and pizza, which were donated, will be served for $1. A donated 2010 Mustang will be raffled through the Matthew Foster Foundation to benefit the family.
‘It is phenomenal. The outpouring in this community is overwhelming,’ said neighbor Melinda Hagie, who is working on the benefit with Carole George and Shelly Ratzell. More than a dozen volunteers meet at the George home to work on the benefit, which has been given a boost from the Rainbow Foundation.
Meghan is a diehard sport fanatic, according to her father, and excels in softball, basketball and volleyball. On the day before she became ill, she tried out to play for Niagara Frontier Volleyball, a traveling team that competes statewide and in Pennsylvania. There were 70 girls who tried out for the 14-under squad and only 30 made it.
The family found out the next day about her cancer.
‘I started feeling an upset stomach on Dec. 6,’ she said. ‘At the worst, I thought is was appendix.’
On Dec. 9, Meghan was suffering from extreme cramping in the abdomen and took a battery of tests at Women and Children’s Hospital in Buffalo. A CAT scan, X-rays and ultrasound revealed a mass on her ovary. She had emergency surgery, and a cancer the size of a cantaloupe was removed.
Ovarian cancer is something usually found in post-menopausal women.
‘They can’t give us any cause,’ Meghan’s father said. ‘There are limited statistics on it.’
Her third treatment was Feb. 6-8, and she returns to Roswell on Friday. Meghan is scheduled for nine treatments.
‘The first three treatments were pretty rough. The third a little smooth,’ Meghan said. ‘I bounce back after a week and hang out with friends. I’ve got a pretty positive outlook on everything.’
Dad said Meghan was scared and upset about losing her hair.
Michael added, ‘Her spirits are great. She is strong-willed and very competitive. Her attitude is fantastic and supportive of us. She’s our little stone. She’s been strong for us. It’s a lot easier with her having a positive attitude. The nurses say that’s half the battle.’
Because the cancer is rare, doctors can’t give a prognosis. Roswell doctors are checking with specialists nationwide for treatment, according to the father.
‘They are optimistic,’ dad said. ‘We’re staying positive. I’m so proud of her.’
Meghan made the junior varsity volleyball team as an eighth-grader and was promoted to the varsity for the sectionals.
A Mediport – a device that delivers medications directly into the blood system – was implanted into a main artery in her chest during a second surgery. Meghan is not allowed to play contact sports, but does travel to games with the Niagara Frontier Volleyball team and cheers on her Roy-Hart basketball team.
‘She’s biting her lips sitting on the bench,’ dad said. ‘The school administration and her teammates are very supportive.’
Her teammates wear pink shirts with her name on it for warm-ups. ‘It’s crazy sitting on the sideline,’ Meghan said. ‘It’s hard, but you gotta do what you gotta do.’
Michael works as a corrections officer at the Albion Correctional Facility, and co-workers have volunteered to do the cooking at the fundraiser. Michael said, ‘Everyone is very supportive. You hear about it all the time, but when it’s happening to you, it’s something else.’
Nancy works as a literacy aide at the Country Parkway School in Williamsville. Dad played football and baseball at Williamsville East, and mom was a track star and softball player at Williamsville North. Brother Nick, 18, is a Niagara University freshman.
Baskets donations are also being accepted and can be dropped of at the Middleport Village Hall or by contacting Carole George at [716-] 772-7834 or caroletup@aol.com, or Shelly Ratzel at [716-]688-8795 or mlr8588@aol.com. Cash donations can be made at any First Niagara Bank or meghansfund.org.
Contact reporter Bill Wolcott at [716-]439-9222, ext. 6246.”
Quoted Source: GASPORT: Strong show of support, by Bill Wolcott, Local Story section, Lockport Union-Sun & Journal, February 21, 2009.
“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.”
Dear Libby,
Libby's H*O*P*E* 