AliveAndKickn and the Colon Cancer Coalition are pleased officially roll out the “LIVING WITH LYNCH” website, an educational resource with the goal to educate the one in 279 Americans who live with Lynch syndrome – including the 95% of those who don’t know they have it. This resource is launching in advance of LYNCH SYNDROME AWARENESS DAY, Sunday, March 22, 2020. The project’s goal is to increase awareness of this genetic condition and provide support and hope for those with the Lynch syndrome gene in their family.
In November 2019, 13 Lynch-positive patients, seven women and six men, eight cancer survivors and five previvors, met for the first time in Houston at a weekend sponsored by Promega Corporation. The Living with Lynch weekend was designed to empower patients living with Lynch syndrome to be advocates for themselves, their families, and others with a shared diagnosis. While together the group participated in round table discussions with experts in genetic counseling, oncology, research, treatment, and immunotherapy. They were also given the opportunity to connect with each other and bond over shared experiences, and participate in Get Your Rear in Gear – Houston.
The participants all shared their stories on video and were photographed to create a series of awareness information that would provide hope and information for others in the Lynch community. The experience is captured at LivingWithLynch.org. The microsite features videos and photos of patients sharing how their Lynch syndrome diagnosis impacts them, their family, and their outlook on the future. AliveAndKickn and the Colon Cancer Coalition hope to help patients Living with Lynch make informed decisions about health and provide a community to relate to as they navigate future health needs.
“The Living with Lynch weekend was an amazing and inspiring experience,” says Jean Edelstein, Living with Lynch participant, Lynch positive, and a cancer previvor. “As a previvor, I know what a Lynch diagnosis means for me, I understand that I have an elevated risk for many cancers in my future. This weekend and meeting these amazing advocates gave me strength to face whatever comes next in my Lynch journey.”
For the Colon Cancer Coalition, it was a privilege to be a part of this weekend. The stories of these 13 individuals and families impacted by Lynch syndrome are eye-opening to the realities of a hereditary cancer diagnosis.
Many individuals with a Lynch mutation develop related cancers much younger than the general population. It is important for individuals to know their family history and begin screening earlier for those with a known Lynch mutation.