Speaking Out for Those Who Can’t | Meet an Advocate Leader

In 2005, Denise Lobodinski’s sister Renee was diagnosed with ovarian cancer at the age of 47. That same year, their father was diagnosed with prostate cancer. But her father’s doctor told Denise’s mother, “Don’t worry about your husband. Worry about your daughter.”

Denise Lobodinski with sister
Denise, right, and her sister Renee

In fifteen years, Denise feels like very little has changed in terms of ovarian cancer outcomes, despite Johanna’s Law being introduced in the Senate just a few months after Renee was diagnosed. Johanna’s Law, also known as the Gynecologic Cancer Education and Awareness Act, aims to save lives through increased awareness of symptoms, which might lead to earlier detection. Denise wrote to her senator and representative seeking their support at that time. And that started her on the path of advocacy.

Denise’s sister passed away at age 53, after a five-year battle. Her father lived for many more years, to the age of 94. 

“The last conversation I had with him, he told me, ‘Denise, you keep speaking out about ovarian cancer,” Denise said.

And so she is.

A voice for others

Denise lives in Marietta, GA, working as a paralegal for a big law firm. She is also an OCRA Advocate Leader, working locally in Georgia to raise awareness of the need for more federal funding of ovarian cancer research, and taking her conviction to Capitol Hill.

“I’ve always felt you have a duty to speak up,” Denise said, “and if we don’t, who will? Who will speak up for our loved ones, and for all the women?”

Denise has always been civically minded. She votes, she’s helped on political campaigns. Having grown up in a military family – her father served the country for 32 years, in WWII, Korea and Vietnam – Denise seeks to find ways that she can make a difference.

Going to the Hill

Denise has gone to the Capitol about half a dozen times to advocate for increased federal funding. Though she is not a survivor, she knows she has a voice. And she feels compelled to use it. Her passion has only grown, largely in part to the people she has met along the way.

“Through OCRA, I have met some amazing survivors, amazing family members. They have become so important to me,” she said.

Denise was nervous the first time she went to speak to her representative. “I felt like, ‘oh my goodness. What if I don’t say things the right way? If I don’t ask the right way?’”

Denise Lobodinski in front of office of Rep Berry Loudermilk

But now she knows there is no right way, as long as you’re asking from the heart. When you believe in the purpose of what you’re asking for; when you’re carrying the stories and the mission of those who have asked before you, or along with you, and are no longer here to do the asking themselves.

One legislative aide told her that they had never before had anyone come and ask for funding for ovarian cancer research. It made her realize that OCRA is the only organization out there doing this kind of work.

A moment of impact

Last year, she went to her representative’s office. It wasn’t her first visit; she had gone three or four times before and never been able to convince him to sign anything. But she went back and met with a staffer who said that the representative would sign the ‘Dear Colleague’ letter asking for increased Department of Defense funding. He told Denise that it was due to her passion about the disease.

“I thought, ‘my passion about the disease?’ My passion is to advocate and tell the stories,” Denise said, “so that we don’t keep having women pass away from this disease.”

Once, she had a legislative aide break down in tears because her grandmother had died from ovarian cancer. Another time, a representative spoke of his newfound understanding that there is a gender issue at play when it comes to ovarian cancer research.

As Denise said, “We’re very passionate about what we’re here for.”

Giving back to the “most loving, giving community”

Denise knows that ovarian cancer doesn’t get the press or the research that other cancers do. In her own, non-scientific research, when she talks about why she travels to DC, she asks people what they think a Pap smear screens for. “I would say that 90% of the people I ask think it checks for ovarian cancer.”

She said that if she won the lottery, she would give her money to ovarian cancer research, advocacy and awareness.

“Ovarian cancer touched my life,” Denise said. “And because it touched my life, I don’t want it to touch others’ lives. This community is probably the most loving, giving community I’ve ever been a part of. We’re together with a voice. And we want to be heard.”

Denise Lobodinski with arms up on Capitol Hill

OCRA’s Advocate Leaders and everyday advocates are making a difference by speaking up for the ovarian cancer community. Learn more about what we’re fighting for, and how you can add your voice.

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