Written by Erin Peterson
Did you know that up to 1 MILLION Americans are living with Lynch syndrome?
Unfortunately, 95% of them don’t know it.
Lynch syndrome is not rare, it is undiagnosed.
Through our work and partnership with AliveAndKickn, we want THAT to change.
Living With Lynch 2024
In October, the Colon Cancer Coalition partnered with AliveAndKickn for the 6th annual Living with Lynch Patient Workshop. The weekend brought together a diverse group of Lynch patients, families, and previvors for intimate conversations and a shared learning experience. Throughout the weekend, the participants created a community through the shared experience of a Lynch diagnosis – many of the patients had previously not met another Lynch patient outside of their own family.
Twelve Lynch syndrome patients and eight of their caregivers or immediate family traveled to Minneapolis; we played Top Golf, went axe throwing, participated in Get Your Rear in Gear – Twin Cities, and most importantly, learned from medical experts about best practices for managing a Lynch diagnosis. Patients discussed Lynch syndrome screenings, talking to family members about the diagnosis, managing cancer care and treatment options, and more.
Through this annual workshop, the goal is to empower patients to advocate for their own care, their family’s care, and the community at large. We educate patients, caregivers, and even the providers about the lived Lynch experience. During this time, participants were able to ask questions and have meaningful conversations with leaders in the healthcare field about the current landscape of research, trials, treatment, and screening.
In addition to community building and education, we also had the opportunity to capture the Lynch syndrome patients’ and caregivers’ stories on video to help educate other patients on their Lynch syndrome journey.
Living With Lynch 2024
Participation in the weekend workshop is by application and invitation, with travel and expenses covered for the selected patients. Plans are still being finalized for the 2025 workshop. Look for the details to be announced and the application to open in early 2025. Follow the Colon Cancer Coalition and AliveAndKickn on social media to be alerted when the application opens.
Our sincere gratitude to Robin and Dave Dubin from AliveAndKickn for being a wonderful partner in this effort, and to the experts who took time out of their busy schedules to join our patient conversations in Minneapolis in 2024. Thank you to Joy Larsen Haidle, genetic counselor, North Memorial Medical Center; Lisa Boardman, MD, gastroenterologist, Mayo Clinic; Karen Hurley, Ph.D, senior clinical health psychologist, Cleveland Clinic; Zsofia Stadler, MD, clinical director, Clinical Genetics Service, Memorial Sloan Kettering Cancer Center; and Ying Liu, MD MPH, Gynecologic Medical Oncology, Clinical Genetics Service, Memorial Sloan Kettering Cancer Center.
Additional thanks to our weekend sponsors: Merck, Bristol Myers Squibb, Foundation Medicine, ImmunityBio, and Exact Sciences.
Learn more about the weekend and Lynch syndrome, and see educational content from previous Living with Lynch weekends at LivingWithLynch.org.
