A Q&A with My Faulty Gene founder Kathy Baker

My Faulty Gene is a nonprofit organization that provides information and assistance to individuals whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. They believe that everyone in need of genetic testing should have access to it. We sat down with Kathy Baker to discuss her personal experiences with cancer, why she started this nonprofit, the importance of genetic testing, and how people can benefit from or get involved with My Faulty Gene’s mission.

Everyone has a story of how they were affected with cancer, would you like to share yours?

Like so many families, my family experienced the effects of cancer, starting with my great-grandmother, who died of pancreatic cancer when I was very young. Then my grandfather (her son) died of prostate cancer. I was very close to my grandfather, so his battle with cancer really hit home. I was in high school at the time. He was diagnosed with prostate cancer at age 59 and was 65 when he died, two days before my sister’s wedding. We went from his funeral to her wedding rehearsal. That same sister was diagnosed with breast cancer when she was 32 years old. Our mother was also diagnosed with cancer and then finally, when I was 42 years old, I was diagnosed with breast cancer.

How has genetic testing affected your family?

What does Cancer Advocacy look like?

Shortly after I was diagnosed with breast cancer, I jumped into the world of cancer advocacy in a big way. There’s something about hearing “You have cancer” to change your perspective. I have an empathy for others with cancer, and I wanted to help make their cancer journeys as smooth as possible. 

I have chaired multiple events—such as fundraisers for American Cancer Society—and I always made sure there was a special emphasis on recognizing survivors because that’s where my heart was. I served on local cancer board in my community, and served as president. I also spent time in Washington with the Cancer Action Network arm of the American Cancer Society. I knocked on doors and asked members of Congress to increase funding for cancer research. I was named a Hero of Hope (now called a Voice of Hope) for the American Cancer Society, which allowed me to travel around and share my story. 

I volunteered and continue to volunteer with an amazing organization called Say YES to Hope, which brings hope to advanced cancer patients. Right now, I’m part of their Friends for the Journey program where they match up newly diagnosed cancer patients with someone with the same diagnosis. 

How did My Faulty Gene come about?

In the beginning of 2020 when the COVID-19 pandemic hit, my professional occupation, which was in the oil and gas industry, was basically shut down. All of a sudden, I had time and  opportunity to follow my passion and do something that I’ve been thinking about for some time, which was to create a nonprofit foundation that would provide information and assistance for people who may benefit from germline genetic testing. 

We have an informational website about genetic testing, genetic predisposition and stories about individuals who have undergone genetic testing and genetic counseling. The website also has links to genetic testing labs, a search engine to help find a genetic counselor, and an application for assistance for people to use to reach out for assistance through us. These are all available at myfaultygene.org. 

What inspired you?

What is your mission? 
To provide more people with our information and assistance. Social media has really been critical in getting our mission out. We’ve been to help people all over the United States. 

It’s pancreatic cancer awareness month. What should people know about pancreatic cancer?

What do you want people to know about genetic testing?

Knowledge is a powerful thing. Lots of times the results of genetic testing are to find that you don’t have a predisposition and what a relief that would be but if you do, it’s vitally important to get that information. 
Identifying a gene that’s defective or altered through genetic testing also doesn’t mean that you’re going to develop the disease associated with the mutation. If you know that you’re at a higher risk, your medical team can begin targeted screening and surveillance which could be lifesaving. 

Many people are fearful of finding out they have a genetic mutation even if they already know they have a family history. How does education make a difference when dealing with test results?
I put off genetic testing myself for a number of years after my cancer diagnosis, because I didn’t want to know. Education was key. Meeting with a genetic counselor is vitally important, either in person or virtually, because they are equipped to educate you and answer any questions you might have. Many people are worried about what they may find out, but I would be more worried about not knowing. 

We had a patient that we recently tested with advanced colon cancer who wanted to complete genetic testing even though it would not help her. She said she could give a real gift to her children if she found out that she had a genetic predisposition because she could let them know that they need to be watching for this. She went forward, and in fact we did find a genetic predisposition to cancer that may have been passed  to her children.

What have you learned since you started the nonprofit?
How resilient people are and how much they want to take charge of their own lives to the extent they can. 

What can people do to get involved? 
People can go to our website, myfaultygene.org to learn more about genetic testing and read stories about people who have gone through testing. We also would welcome financial support from both individuals and the medical community. We are working hard to reach underserved communities, including people with a personal or family history of cancer, who are uninsured or underinsured, and donations of any amount are appreciated. All donations go directly to fund genetic counseling and genetic testing. 

A final message from Kathy: 

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