What: Frankly Speaking About Ovarian Cancer webinar
When: Tuesday, March 20, 2012
2:00 PM – 3:00 PM EDT

Click the button below to reserve your Webinar seat now!
REGISTER

The founders’ first activity was to piece together a quilt, which they raffled off to raise money for the fledgling organization. Those funds were used for the founders to travel to an Ovarian Cancer National Alliance conference in Washington, DC. “They learned about the Partner Member program and how to be local advocates,” says Beth Hudson, President of SLOCA.

The group soon became a Partner Member of the Alliance, and continues to value that association. “Being a Partner Member really lends credibility to our organization,” notes Beth. She hopes to take advantage of the benefits and training offered to Partner Members in the coming year.

As its name implies, awareness is a key focus of SLOCA’s programs and activities. Beth says their “number one” awareness activity is the Alliance’s Survivors Teaching Students: Saving Women’s Lives® program. “Through the medical students and nurse practitioner students, we feel we are reaching so many people.” One testament to the program’s strength is that a local nurse practitioner program, which does most of its teaching through online classes, devotes an hour to STS during the one week that students spend on campus.

SLOCA also runs a speaker’s bureau that sends survivors to talk with church groups, community groups, and lunch-and-learns—“Wherever people will listen to our message,” notes Beth. Volunteers also attend health fairs and conferences to get the word out about ovarian cancer.

During National Ovarian Cancer Awareness Month in September, the Cardinals host an ovarian cancer awareness night at Busch Stadium. This event was one of founder Christina Carr’s ideas, but she passed away before seeing it happen. Now, SLOCA regularly sells out 500 tickets to the game, and raffles off the opportunity to throw out the first pitch that night. In 2011, the group also got permission to turn a large fountain near Busch Stadium teal. During the week that the water was tinted teal, SLOCA volunteers stood near the fountain at lunchtime and handed out information about ovarian cancer.

One event is already in the works for September 2012: a day-long conference for ovarian cancer survivors, scheduled for September 15. SLOCA is hosting the event along with the Cancer Support Community, another Alliance Partner Member. Sessions will cover topics like nutrition, the CA-125 test and changes in sexuality following a cancer diagnosis.

Another key element of SLOCA’s mission is funding research. The group works with the Foundation for Women’s Cancer to pick an ovarian cancer research project to fund, and gives away $25,000-50,000 annually.

The last piece of SLOCA’s mission is providing support to survivors in the greater St. Louis area. In addition to programs like the upcoming conference, the group provides support through “Sister Gifts.” Newly diagnosed women receive a package from SLOCA containing materials like a ball cap, CD, water bottle, list of local resources and an encouraging letter from the organization. The group expects to give away about 200 Sister Gifts this year to women in the St. Louis area.

As SLOCA and the Alliance celebrate anniversaries this year, both groups continue to work as partners, supporting women in St. Louis and across the nation who are facing the challenges of ovarian cancer.

The research team’s analysis showed that the 5-year overall survival rate for ovarian cancer was 36 percent for non-carriers, 44 percent for BRCA1 mutation carriers, and 52 percent for BRCA2 mutation carriers.

Read the National Cancer Institute’s coverage of the study here

Responsibilities:

• Work with existing Partner Members, staff and grasstops to develop and implement an outreach plan
• Develop and coordinate programs designed to promote the Ovarian Cancer National Alliance and its services to the community and the target population
• Help train advocates for policy work, scientific review, etc.
• Cultivate relationship with potential advocates, including new potential Partner Members, grasstops or others
• Coordinate regular meetings and outreach to ensure attendance
• Work with existing team at the Alliance to incorporate social media, Capitol Hill and other efforts as needed
• Create qualification process for Partner Members, grasstops, etc., and provide materials to said constituencies as needed
• Work with advocates to evaluate membership structure and hold processes for changes as needed
• Work closely with Vice President for Policy and External Affairs to coordinate efforts
• Represent the Alliance at various meetings
• Plan, recruit and manage annual Advocacy Day on Capitol Hill in conjunction with other staff
• Keep a log of duties, activities and time

Qualifications:

• Prior organizing experience
• Strong verbal and written communication skills
• Excellent relationship building and people skills
• Experience with campaign strategy development and implementation
• Proficiency with Microsoft Office, including Word, Outlook and Excel
• Detail-oriented
• Self-motivated
• Able to work independently
• Patience, persistence and flexibility
• Enthusiasm and tact
• Positive attitude, high energy and good work ethic

To Apply:

Send resume and cover letter to advocacy@ovariancancer.org by February 15, 2012.
No phone calls please.

Read the abstract here

Read the press release here 

Read an article about the study here

Some disparities may not be due to bias, but because of a patient’s unique needs.

The abstract is available here

An article on the study is available here

The Ovarian Cancer National Alliance Midwest Regional Conference will bring together survivors, caregivers and medical professionals to learn about local research and clinical trials, ways to be involved in this cause and quality of life issues. The conference will give attendees the opportunity to network and share their story with other ovarian cancer survivors and caregivers. Click here for a draft agenda.

Registration is $50 and covers breakfast, lunch and materials. To register, fill in the fields and click the button below or download the registration form and mail it with your payment. Please register by Friday, March 2, 2012.

Email address:

Phone number:

The Midwest Regional Conference is hosted by our Partner Members
Michigan Ovarian Cancer Alliance
Minnesota Ovarian Cancer Alliance
Ovar’Coming Together
Ovarian Cancer Alliance of Ohio
Wisconsin Ovarian Cancer Alliance

We have reserved some rooms at the JW Marriott at the discounted rate of $169 per night. Rooms must be reserved by February 8, 2012 to receive this rate. To reserve a room click here or call 866-704-6162 and mention you are with the Ovarian Cancer National Alliance conference.

Ken Burger, President and CEO of Charity Navigator, notes that “Receiving four out of a possible four stars indicates that your organization adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way. Only 13% of the charities we rate have received at least 2 consecutive 4-star evaluations, indicating that Ovarian Cancer National Alliance outperforms most other charities in America.”

Click here to view our evaluation from Charity Navigator.

You can make a donation to the Ovarian Cancer National Alliance here.

“While we are looking for that silver bullet, this is a gift that shouldn’t be overlooked,” said Karen Orloff Kaplan, chief executive of the Ovarian Cancer National Alliance.

In one study, the use of Avastin provided an additional six weeks of progression free survival; in another study the drug provided an additional 16 weeks of progression free survival.  There is currently no biomarker or other test to determine which patients will benefit from Avastin, and the side effects of the drug can be serious. Because the Food and Drug Administration has been focusing on overall survival benefits, many do not think the drug will be approved for ovarian cancer in the United States.

Read more here