Creating an Advocacy Group at the Onset of a Global Pandemic: KRAS Kickers Founder Shares Her Story

Advocacy Groups | <b>KRAS Kickers</b>

Lung cancer survivor Terri Conneran shares her story of creating a non-profit to help connect with fellow patients and survivors who have the KRAS biomarker.

When Terri Conneran discovered she had a KRAS biomarker that was causing her lung cancer, she wanted to join a group of fellow patients with the KRAS gene; instead, she ended up founding that group herself.

In the summer of 2016, when Conneran was having difficulty breathing she dismissed it as seasonal allergies. When it got worse, she was prescribed an inhaler by her doctor. When the symptoms persisted months later and she also began to experience chronic fatigue, she went to see the doctor again. The doctor found fluid in her lung and ordered a chest X-ray, where she discovered a tumor in her lung. Eventually, she was diagnosed with stage 3 non-small cell lung cancer at only 55 years old.

After undergoing three rounds of chemotherapy, she underwent a lobectomy (a surgical procedure where a part of the lung, known as a lobe, is removed) and was declared no evidence of disease in July 2017. Seeking support in navigating survivorship, she joined a group for lung cancer survivors in late 2017.

At these meetings, she realized that many people would speak about what type of biomarkers they had and how that affected their treatment. Curious, she asked her doctor who told her she didn’t have one. Conneran had two recurrences of cancer and was told every time, that she did not have a biomarker.

After her three-year anniversary of being cancer free, Conneran decided to seek a second opinion. The second oncologist Conneran spoke with informed her that she actually had the KRAS biomarker, which is a mutation in the expression of the KRAS gene. Of note, the KRAS gene is a gene that creates the K-Ras protein, which is involved in cell signaling pathways that control cell growth, cell maturation and cell death. When there is a mutation in this gene, it signals too much and cells grow without being told to, which causes cancer.

Eager to find a support group for people with the same biomarker she looked online, only to realize that none existed. So, in January 2020, she decided to create one herself and founded KRAS Kickers, a non-profit for people with the KRAS gene that has a goal of connecting patients to research about the topic. During the COVID-19 pandemic, she used the popularity of virtual conferences and meetings to her advantage and was able to expand the organization to a global audience.

In today’s episode of the “Cancer Horizons” podcast, the now 61-year old shares what it was like to create an advocacy group in the beginning of a global pandemic, what the recent Food and Drug Administration (FDA) approval of Krazati means for patients with lung cancer, the importance of biomarker testing, lessons she has learned on her experiences with cancer and more.

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