SLOCA's Story

St. Louis Ovarian Cancer Awareness had a modest beginning that started with a simple dream.

Christina Carr, an ovarian cancer survivor, wanted to increase awareness of her disease. To do that, she needed help.

In the early part of 2002, Chris reached out to six women she’d met during the course of her cancer treatment and invited them to form with her an organization that could help fulfill her dream. The six who became co-founders of SLOCA with Chris were Judy Parham and Nancy Vomund Larson, both oncology nurses; Joanne Guerrerio, a psychological resource nurse; JoAnn Carter, Diane Harrison and Grace Katzenberger, who were all survivors of ovarian cancer. Chris, JoAnn, Diane and Grace were members of the Together support group at BJC that was led by Joanne.

The early days were spent in honing our mission, incorporating with the state of Missouri, electing officers and obtaining an Employer Identification Number (EIN) from the IRS.

The mission we drafted in those early days has stood the test of time:

“St. Louis Ovarian Cancer Awareness (SLOCA) is committed to impacting ovarian cancer survivorship by promoting awareness of early warning signs and standard of care, enabling early diagnosis, promoting ovarian cancer research and survivor support.”

The first board was comprised this way:

Christina Carr, President
Judy Parham, Vice President
Nancy Vomund Larson, Vice President Medical Affairs
Grace Katzenberger, Secretary/Treasurer
JoAnn Carter, Educational Director
Diane Harrison, Publicity
Joanne Guerrerio, Public Relations

Some of the organizational work took a bit of money – and, so far, SLOCA had no treasury. It cost $25 to incorporate. Each board member chipped in $5.

In September 2002, all seven board members traveled to Washington, D.C., to attend the Ovarian Cancer National Alliance conference to learn how to become an advocacy organization. A quilt made by survivors, caregivers, nurses and family members was on display at the conference, and it sparked conversation among the St. Louis contingent. We decided to make a similar quilt and use it for a display at health fairs. Judy Parham, a quilter, offered to teach us to make quilt blocks; when all of the blocks were ready, Judy would put them together in one big quilt.

On our return from Washington, we began planning our first seminar. A drug company agreed to give us $250 to put on the seminar. The problem was that we had no printed brochures or other educational material about ovarian cancer. We turned to OCNA for help. If we spent $100 to become a member of the Alliance, it would send us awareness material that could be handed out at the seminar. Once again, we passed the hat and came up with the $100 we needed. The seminar was held in February 2003 at St. Mary’s Medical Center.

In the meantime, we generated some ideas for fund raising. Grace Katzenberger decided to make a quilt for a raffle. Problem was, she’d never made a quilt on her own. Not to be deterred, Grace bought a book on quilting and supplies and put together her first block. She took it to the board and, with its approval, kept plugging along. When the quilt was finished, the board raffled it off for $1,320!

Judy Parham invited survivors, caregivers and nurses to learn how to make quilt blocks for the quilt that would be displayed at health fairs, seminars and fund raisers. Diane Harrison created the center block for the first quilt in needlepoint; it was a design featuring SLOCA’s logo. We finished that quilt, and another, and a third is almost finished.

Christina Carr suggested we make teal bracelets as another fund raiser. Becky Scott, another survivor of ovarian cancer, taught us how to make them, and Nancy Larson took on this project. Soon we were in the jewelry business. Besides bracelets, Nancy also started to make earrings.

We applied to the federal government for tax-exempt status as a 501(c)3 organization. We were approved in August 2003. The paperwork cost us $150, but this time we had money in the treasury. We had started our bank account with the $250 check we received for putting on the seminar.

Earlier in 2003, Chris suggested SLOCA sponsor an awareness day at Busch Stadium. She asked if we thought we could sell 500 tickets – a number that would entitle us to attend batting practice and have a field ceremony. In September 2003 we had our first Ovarian Cancer Awareness Day at Busch Stadium, and we have had one every year since then.

Sadly, Chris became very ill just before that first awareness day and was hospitalized. The doctors released her from the hospital just to attend the game. She passed away in November of that year.

After Christina passed away, Grace picked up on a project Chris had started – submitting a grant request to a drug company. The company awarded SLOCA $7,500, which allowed us to buy our own brochures, awareness cards and teal lapel pins.

In 2004, we planned our first fund raiser: a silent and live auction. Nancy Larson agreed to chair the benefit. With help from many people, we raised more than $32,000. We have had a dinner auction every year since then.

In addition, we hold a fashion show and luncheon each fall. It raises money and awareness and, by showcasing survivors as models, it celebrates survivorship.

In 2009, we started two new fund raisers, both of which promise to become perennial favorites.

One was an end-to-end ride on the Katy Trail, called Trail Ride for Ovarian Cancer Awareness, or TROCA. Karen and Stuart Higano, both avid cyclists, kicked off the three-day ride in September 2009 and raised more than $12,000.

The second was a yoga event called Rise & Shine: 108 Sun Salutations. Amy Bell, the niece of an ovarian cancer survivor, initiated this event to raise money and awareness.

We’ve pursued four tracks to heighten awareness about ovarian cancer:

We attend numerous health fairs, festivals and the Working Women’s Survival Show.
We speak to small and large groups of women and men.
Through the program Survivors Teaching Students: Saving Women’s Lives, survivors tell their stories to third-year medical students at Washington and St. Louis universities, to nurse-practitioner students at UM-St. Louis and St. Louis University, and to resident doctors at St. John’s Mercy Medical School.
We have sponsored two ovarian cancer survivors’ courses put on by the Gynecologic Cancer Foundation. Thanks to a $25,000 grant from SLOCA, each course has drawn national speakers to speak to cancer patients and survivors and their caregivers at no cost to those attending.

We also strive to support patients and survivors. Since 2005, we have assembled gift bags containing books, chemo caps and water bottles for newly diagnosed patients entering chemotherapy. SLOCA members also attend the GYN networking group at The Wellness Community and the Together group at Barnes-Jewish Hospital, and we participate in the Survivors Walk for The Wellness Community and the Families ROC 5-K in Forest Park.

In 2008, SLOCA launched a membership campaign. It has since attracted about 150 members who pay a modest fee ($10 for an individual, $25 for a family). We started a quarterly newsletter in December 2009, and we have plans to revamp and expand our web site in 2010.