I am Suzan Mayberry, Founder and Outreach Director of Mayberry Memorial, a Lynch syndrome (LS) 501(c)(3) nonprofit. I am a widow and mother of an MSH2 Lynch syndrome family. My husband Steve died young in 2010 at age 50 from colon cancer, never knowing that he had Lynch syndrome. I passionately advocate that had he known of his LS, he would have had preventative screenings and would still be with our family today. One of my two sons, Dr. Travis Mayberry, tested positive and lives with Lynch syndrome. He is taking preventative measures so he has the best chance of avoiding cancer. A previvor at age 35, he is Mayberry Memorial’s president.
These two individuals, an undiagnosed victim and a previvor, represent Mayberry Memorial’s drive to do whatever it takes to ensure that no other family loses a member due to undiagnosed Lynch syndrome. Our purpose culminated in the creation of Mayberry Memorial's flagship program, Project Conquer. This effort provides approved applicants with financial support for genetic counseling and genetic testing for Lynch syndrome.
The Lynch syndrome population
According to the NIH, LS is the most common inherited form of colorectal and endometrial cancers, affecting approximately one million people (one in 300) in the United States. Lynch syndrome affects more people than the well-known BRCA mutations, which cause a hereditary syndrome that increases the risk for breast, ovarian and other cancers. Yet, 95 percent of people who have LS don’t know it.
A previvor is someone who has a higher risk of developing cancer due to an inherited mutation, family history or other factor but has not been diagnosed with cancer. The term is meant to convey that people with a predisposition to cancer, such as those with Lynch syndrome, have
unique needs and concerns, and that they have choices to reduce their risk of developing cancer.
Our mission from colon cancer to Lynch syndrome
Mayberry Memorial's mission began in 2011 to raise money for colorectal cancer following Steve's death. Competition BBQ was Steve’s favorite pastime. He lived for the next cook-off, and he would tell anyone that it was the most fun he could find. Prior to his passing, Steve and his Cosmic Cooks team were avid barbecue cookers who competed at sanctioned cook-off events. It seemed natural then for Mayberry Memorial to raise money by creating the sanctioned “Steve Mayberry Memorial Cook-Off” in his memory. This fundraiser took place for eight years in Steve’s hometown of Carrollton, TX, and raised over $80,000 towards colorectal cancer research for Fight Colorectal Cancer and Baylor Healthcare.
After losing Steve’s brother Greg to cancer in 2020, Mayberry Memorial shifted its focus from colon cancer to Lynch syndrome. One of the first things we did was recruit a Medical Advisory
Council to help our organization with topics related to LS and assist with the development of new programs offered through Mayberry Memorial. We wanted to positively impact the undiagnosed Lynch syndrome population and their families, specifically serving the underserved and underinsured with a cost-effective product that is easy to quantify.
Project Conquer
With our new focus on Lynch syndrome, we created Project Conquer. This program provides financial support for approved applicants to receive genetic counseling and genetic testing for Lynch syndrome. We partner with Informed DNA to offer this service across the entire USA. Informed DNA has fully licensed board-certified genetics experts across all subspecialties. This teaming ensures people who complete Project Conquer receive a trusted, simple service, however, candidates may opt out of Informed DNA if they would like to choose their own genetic counseling and genetic testing resources.
We have so far raised funds for 100 applicants to be served through Project Conquer, and we are eager to identify more previvors to save more lives and families. While Mayberry Memorial does not require applicants to give us feedback; we welcome it as inspiration for others to learn about their genetic condition and take charge of their lives.
Looking forward
So much has been learned about Lynch syndrome since we lost Steve. Immunotherapy treatment is now saving lives. We are also excited by the Lynch syndrome vaccine currently in clinical trials. We strongly encourage you to share information about Project Conquer with your family, friends, colleagues and anyone you can find! The more people you help us reach, the more Lynch syndrome previvors we can identify and the more lives we can save.