This episode is part of a five-part series on living with Lynch syndrome, focused on raising awareness and sharing perspectives from patients, advocates, and organizations working to improve outcomes in hereditary cancer.

In this episode, Sara Kavanaugh speaks with Joan Rush, co-founder of the Jacqueline Rush Foundation, an organization dedicated to raising awareness of Lynch syndrome among both patients and the medical community.

Joan shares the story of her daughter Jacqueline, who was diagnosed with colorectal cancer at just 20 years old after years of symptoms that were dismissed. During treatment, Jacqueline and her family learned the underlying cause was Lynch syndrome.

Although Jacqueline passed away at 23, her story continues to shape awareness, research, and advocacy in meaningful ways.

This conversation highlights:

• the importance of recognizing symptoms earlier, even in young patients
• the need for greater physician awareness of Lynch syndrome
• how research and treatment have evolved significantly since Jacqueline’s diagnosis
• and why knowledge of genetic risk can change outcomes

As Joan shares, “Knowing you have Lynch syndrome changes everything. It gives you the opportunity to change your genetic destiny instead of leaving it up to fate.”

• Awareness can change outcomes. Earlier recognition of symptoms and genetic risk can alter the course of care.
• Lynch syndrome is often underrecognized. Gaps still exist in both public and physician awareness.
• Genetic knowledge creates opportunity. Screening, prevention, and early detection save lives.
• Research is advancing rapidly. Immunotherapy and prevention-focused trials are changing what’s possible.
• Advocacy plays a critical role. Bridging the gap between patients and providers remains essential.

Jacqueline Rush Foundation 🌐 https://jrushfoundation.org

Media & Awareness

• Today Show segment on Lynch syndrome
• Katie Couric feature on Jacqueline’s story

Lynch Syndrome Conferences (Patient-Focused)

• Penn Medicine Lynch Syndrome Conference (virtual + recordings available)
• Dana-Farber Lynch Syndrome Conference (virtual + recordings available)
• University of Colorado Cancer Center (biennial conference)

👉 Many sessions offer recordings/replays—check institutional sites for access.

Additional Resource

• Previvor Perspectives Discussion - Living with Lynch Syndrome Risk

Jacqueline’s story reflects a time when awareness and options were limited.

Today, the landscape is different.

There are better tools, more research, and more opportunities to prevent or detect cancer early.

This episode is not only about loss. It’s about what is now possible.

If this episode resonates, consider sharing it with:

• a family member
• a young adult experiencing symptoms
• or a healthcare provider

🎧 The Positive Gene Podcast - https://thepositivegenepodcast.podbean.com/