National Cancer Institute

Cervivor School Seattle Reflections

In the heart of the Pacific Northwest, amidst the city landscapes of Seattle, Washington, a group of resilient cervical cancer survivors recently gathered to embark on a patient advocacy journey that transcended the boundaries of a traditional classroom.

Cervivor School, an immersive patient advocacy training program for cervical cancer survivors hosted by Cervivor, Inc. trained 23 new attendees with a deep dive into the psychosocial aspects of cervical cancer and paired it with the latest science to help them understand the scope of the national and global disparities. In this blog post, we will take you on a reflective journey through the empowering experiences, inspiring stories, and invaluable insights gained during the Cervivor School in Seattle:

“I went to Cervivor School, afraid of not belonging, but I returned with a feeling of sorority and acceptance. Cervivor School exceeded my expectations by far. There was an energy and a contagious passion. I felt enlightened and empowered like never before. After hearing the stories of these extraordinary women, it gives me more reasons to do something to end cervical cancer.” – Claudia Perez-Favela, California

“This past weekend was amazing. Cervivor School was so informative. The knowledge gained is beyond words. I felt so empowered being in a room filled with so many powerful women and the love and support given is just fantastic. I felt a sense of belonging from the get go, there was no awkward moments in the room and I loved that. I admired how everything tied in nicely. I applaud Team Cervivor for the work they put into Cervivor School to make it a reality.  Once again, thank you for allowing me to be part of this.” – Nymphia Emmanuel, St. Lucia

“Firstly, I was so privileged and grateful for the opportunity to attend Cervivor School in Seattle Washington. Meeting with other Cervivors, sharing our stories encouraging each other to be empowered, and learning together how we can all make a difference in our society by advocating for others against cervical cancer and HPV. My personal goal is to gain my voice, knowing that I have the power to help eradicate cervical cancer mortality rates. Sharing my story and being a “Pillar” of hope to someone is making a difference.” – Davina Woolward, Guyana

“It was an incredible opportunity to connect with fellow survivors and advocates with whom I have shared journeys and passions. The sense of belonging and support within the Cervivor community is a big extended family and the knowledge and skills I gained during my time there were invaluable. Learning from experts in cervical health and hearing the inspiring stories of resilience from others was not only educational but deeply empowering. It was a reminder that I am part of a strong, compassionate, and dedicated network working together to raise awareness about cervical cancer, and the HPV vaccination and make a positive impact and a change in women’s health. Cervivor School left a permanent mark on me, and I am grateful for the chance to be a part of such an incredible community.” – Julianna Colley, Georgia

Before we shift our focus to celebrating the remarkable individuals who have earned the prestigious title of Cervivor Champion, we want to extend our heartfelt gratitude to the dynamic speakers and passionate advocates who graced our event with their insights and experiences – Thank you to Dr. Linda Eckert of the University of Washington, Dr. Hyo Sook Bae of the National Cancer Institute, Roshanda Pratt of the REP Network, Kiara Long of the American Cancer Society, Dr. Carolyn Kay of Roche Diagnostics, Dr. Sarah Villarreal of the University of Washington, Dr. Leeya Pinder of the University of Cincinnati, Christina Turpin of the National HPV Vaccination Roundtable, Dr. Yolanda Evans of Seattle Children’s Hospital, Kate Weissman, Cervivor Ambassador, and the incredible team at Cervivor for the impactful conversations and necessary information to become well-informed patient advocates. A special thank you also goes out to Mike Hill and Sue Collins of Moonshine Agency for selecting Cervivor School as an exclusive film screening for Conquering Cancer in the United States.

Next, we extend our warmest congratulations to the exceptional individuals who have been named as the newest Cervivor Champion award recipients. Your dedication, resilience, and unwavering commitment to the fight against cervical cancer have not only transformed your own lives but have also left an indelible mark on our community.

As Cervivor Champions, you embody the spirit of advocacy, turning your personal journeys into powerful forces for change. Your voices and stories inspire, educate, and empower others to take control of their health and join in the mission to end cervical cancer. We celebrate your achievements, and we look forward to witnessing the positive impact you will continue to make in the world of cervical cancer advocacy.

Congratulations to Anna Ogo, Anne Zajic, Cindy Trice, Josyln Paguio, and Kadiana Vegee!

In our relentless pursuit to end cervical cancer, the voices of patient advocates are not just valuable; they are absolutely necessary. Patient advocates are the heart and soul of our movement, the driving force behind the progress we’ve made, and the torchbearers of hope for a future free from this devastating disease. Their lived experiences, their determination, and their unwavering commitment serve as inspiration and hope for individuals facing a cervical cancer diagnosis, and as a powerful catalyst for change within healthcare and policy systems.

Patient advocate voices remind us that behind every statistic is a human life, and that the fight against cervical cancer is not just a medical journey, but a deeply emotional taxing one. As we move forward, let us continue to amplify these voices, to listen, to learn, and to stand together in the unshakable belief that one day we can, and will, bring an end to cervical cancer.

Together, we are a force to be reckoned with, and with each voice that joins our mission, we come one step closer to a world where cervical cancer is but a distant memory.

Lastly, Cervivor, Inc. would like to thank our generous sponsors for supporting our mission of educating and empowering individuals impacted by cervical cancer to take action and create change in their local communities and beyond. Thank you, Hologic, Seagen, Genmab, and Genentech.

We’re Part of the Process

Kimberly Williams, Cervical Cancer Survivor

In July 2022, I was invited to my first NRG Oncology semi-annual conference as a newly appointed Patient Advocate. Many of you might be wondering, who NRG Oncology is and what they do?

NRG Oncology comprises the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG), and the Gynecologic Oncology Group (GOG). Together they have more than 150 years of cumulative experience in conducting practice-defining, multi-institutional phase II and III trials sponsored primarily by the National Cancer Institute (NCI).

I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.

Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.

Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”

I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.

Morgan Newman, Community Engagement Liaison

I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:

  • It was founded in 1970 at the American College of Obstetricians and Gynecologists.
  • In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life. 
  • And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.

Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.

What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.

When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.

Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.