Lynch Syndrome Awareness

Non-profit 501(c)(3) Our goal is to raise awareness about Lynch Syndrome which is a hereditary genetic mutation that increases the risk of several cancers. 1 in 279 people have Lynch and 95% are unaware.

Could exercise actually influence cancer-related biological signals in people with Lynch syndrome?New research studying ...
05/31/2026

Could exercise actually influence cancer-related biological signals in people with Lynch syndrome?

New research studying **exercise-induced circulating microRNA signatures in healthy Lynch syndrome carriers** is exploring how physical activity may impact tiny molecules in the body linked to inflammation, immune responses, and cancer-related pathways.

MicroRNAs are small molecules that help regulate how genes behave. Researchers found that exercise may trigger measurable biological changes in Lynch syndrome carriers — offering new insight into how lifestyle factors could potentially influence cancer risk and prevention strategies in the future.

Why is this exciting? It suggests exercise may do more than improve general health — it could also affect important molecular pathways connected to cancer development.

The study adds to growing research showing that:
🔹 Physical activity may help support immune function
🔹 Exercise can influence inflammation and cellular signaling
🔹 Lifestyle factors may play a role in long-term cancer prevention

While researchers are still learning exactly what these findings mean clinically, studies like this help move us closer to more personalized prevention strategies for Lynch syndrome families.

Science continues to show that small daily choices may have powerful long-term effects.

Let’s talk:
Has exercise, movement, or lifestyle changes helped you feel more in control of your Lynch syndrome journey?

Read more: https://jyx.jyu.fi/jyx/Record/jyx_123456789_109156 #

Living with Lynch syndrome doesn’t just affect physical health — it can deeply impact mental and emotional well-being to...
05/29/2026

Living with Lynch syndrome doesn’t just affect physical health — it can deeply impact mental and emotional well-being too.

A new study exploring health anxiety in people diagnosed with Lynch syndromefound that many individuals experience ongoing worry, fear of cancer, stress surrounding screenings, and uncertainty about the future.

For many in the Lynch syndrome community, thoughts like:
• “What if they find something this time?”
• “Am I doing enough?”
• “Will my family members be affected too?”

…can become part of daily life.

Researchers emphasized that health anxiety in Lynch syndrome is real, common, and deserving of support — not something people should feel pressured to “just get over.”

At the same time, many people also shared that knowledge, regular surveillance, supportive healthcare teams, counseling, and connecting with others in the Lynch syndrome community helped them regain a sense of control and hope.

If you’re struggling with anxiety related to Lynch syndrome, you are not alone.

Let’s check in with each other:
What has helped you cope most with the stress or uncertainty that can come with a Lynch syndrome diagnosis?

Read more: https://journals.lww.com/jporp/fulltext/2026/04000/understanding_health_anxiety_in_people_diagnosed.2.aspx?context=latestarticles

ASCO: UT MD Anderson faculty honored as 2026 Special Award recipientWe are honored to share this well deserved award for...
05/28/2026

ASCO: UT MD Anderson faculty honored as 2026 Special Award recipient

We are honored to share this well deserved award for Dr. Eduardo Vilar-Sanchez and we are truly thankful for his commitment to our expert board panel.

Vilar-Sanchez recognized for improving lives through cancer prevention

Vilar‑Sanchez is a globally distinguished physician-scientist whose work has significantly advanced cancer prevention, particularly for individuals at high risk for hereditary and gastrointestinal cancers. He has dedicated his career to translating discoveries in cancer genetics and molecular biology into effective prevention strategies and improved patient care.

His leadership in hereditary cancer research stands out, with a focus on genetic syndromes that predispose individuals to colore**al and other cancers. His work has helped define optimal screening, surveillance and risk‑reduction strategies for high‑risk populations, directly influencing clinical practice and preventive care worldwide.

By integrating molecular science with clinical research, he has advanced understanding of how early detection and targeted interventions can reduce cancer incidence and mortality.

In addition to his research contributions, Vilar‑Sanchez is a highly respected clinician and advocate for prevention-focused care. He is deeply committed to patient education, genetic counseling and multidisciplinary collaboration to ensure that advances in science translate into meaningful benefits for patients and families. He also has been a strong mentor to trainees and early‑career investigators, helping cultivate the next generation of leaders in cancer prevention research.

https://www.mdanderson.org/newsroom/asco-ut-md-anderson-faculty-honored-as-2026-special-award-recipients.h00-159855345.html

05/27/2026
This Memorial Day, we pause to honor and remember the brave men and women who gave their lives in service to our country...
05/25/2026

This Memorial Day, we pause to honor and remember the brave men and women who gave their lives in service to our country.

As we spend time with family and loved ones today, we also recognize the strength, sacrifice, and resilience shown by so many — both in military service and in everyday battles with health challenges like Lynch syndrome.

At Lynch Syndrome Awareness, we are grateful for the families, caregivers, healthcare workers, advocates, and survivors who continue to fight for awareness, research, and hope.

Today, we remember those we’ve lost.
We honor those who continue to fight.
And we stand together as a community built on strength and support.

If you’d like, take a moment below to honor someone special — whether a military hero, a loved one lost to cancer, or someone currently fighting a difficult battle.

A powerful new case report highlights the complex reality of living with Lynch syndrome — especially during pregnancy.Re...
05/24/2026

A powerful new case report highlights the complex reality of living with Lynch syndrome — especially during pregnancy.

Researchers recently shared the story of a pregnant woman with Lynch syndrome who was diagnosed with locally advanced re**al cancer during her second trimester. Because Lynch syndrome increases the risk of colore**al and other cancers, her care required a highly individualized and multidisciplinary approach.

After difficult medical decisions, the patient underwent treatment that included:
🔹 Chemoradiotherapy
🔹 Immunotherapy
🔹 Surgery

The outcome? Significant tumor regression and no evidence of disease at follow-up.

This case also highlights the growing role of immunotherapy in Lynch syndrome–related cancers and the importance of:
• Early recognition of symptoms
• Genetic testing and counseling
• Personalized treatment plans
• Multidisciplinary care teams

💙 Stories like this remind us how important research, awareness, and advocacy are for Lynch syndrome families navigating incredibly difficult decisions.

Read more: https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2026.1813750/full
👇 Let’s talk:
Have you or your family ever faced difficult medical decisions related to Lynch syndrome, pregnancy, fertility, or cancer treatment? What support helped you most during that time?

Exciting new research is shedding light on how immunotherapy may help prevent cancer in people with Lynch syndrome — bef...
05/22/2026

Exciting new research is shedding light on how immunotherapy may help prevent cancer in people with Lynch syndrome — before cancer even develops.

A recent study on the Nous-209 immunotherapy found that the specific mutations it targets appear very early in precancerous lesions in Lynch syndrome carriers with microsatellite instability (MSI).

Why does this matter?
It suggests that future vaccines or immune-based treatments could potentially recognize and attack abnormal cells at the earliest stages — possibly before they become invasive cancers.

Researchers are continuing to explore how the immune system can be trained to recognize these shared “frameshift” mutations commonly seen in Lynch syndrome-related cancers.

This is another important step toward:
• Earlier intervention
• Personalized prevention strategies
• Immune-based cancer prevention
• Better outcomes for Lynch syndrome families

While more research is still needed, studies like this give hope for a future where prevention may go far beyond screening alone.

Science is moving forward — and so is hope for the Lynch syndrome community.

What are your thoughts on cancer vaccines and immunotherapy for Lynch syndrome? Would you consider a preventive treatment option if it became available?

Read more: https://pubmed.ncbi.nlm.nih.gov/42108525/

What if one genetic mutation could help unlock the future of cancer prevention?New research and expert insights from Tam...
05/20/2026

What if one genetic mutation could help unlock the future of cancer prevention?

New research and expert insights from Tampere University highlight how studying Lynch Syndrome is helping scientists better understand how cancers form — and how they may someday be prevented before they even begin.

Because Lynch syndrome tumors often trigger a strong immune response, researchers believe they may become one of the first targets for preventive cancer vaccines. That’s a huge step forward in personalized medicine.

Researchers are also learning more about:
• Why some Lynch-related cancers respond well to immunotherapy
• How surveillance and early detection improve survival
• The role aspirin and lifestyle factors may play in reducing risk
• Why different Lynch genes (MSH2, MLH1, MSH6, PMS2) behave differently

One of the most hopeful parts?
Scientists are no longer just focused on treating cancer — they are actively working toward preventing it in high-risk individuals.

For families living with Lynch syndrome, progress like this matters. Every new discovery brings us closer to earlier detection, better treatments, and a future with fewer cancer diagnoses.

If you or someone you love has Lynch syndrome, you are not alone — and research is moving forward faster than ever.

Read more: https://trepo.tuni.fi/bitstream/handle/10024/236931/978-952-03-4617-1.pdf?sequence=2

Thank you Kathy My Faulty Gene for sharing our story!
05/18/2026

Thank you Kathy My Faulty Gene for sharing our story!

Two women.

One hereditary cancer syndrome.

And for most of their lives, they didn’t know the other existed.

* * * *

Jennifer didn’t know the identity of her biological father until she was 25.

Before his death, she learned he carried a rare MSH2 mutation with a Boland inversion — Lynch Syndrome and Muir-Torre Syndrome.

After his death, Jennifer underwent genetic testing herself and learned she carried the same mutation.
____

Thrisha had spent her life believing someone else was her biological father.

She didn’t learn the identity of her actual biological father until 14 months after his death.
____

Curious about her newly discovered biological family’s roots, Jennifer turned to ancestry testing.

Around the same time, Thrisha decided to take an ancestry test — just for fun.

DNA Angels contacted both women separately to tell them they appeared to be half sisters.
____

Jennifer’s immediate response was:

“Oh my gosh!! First off, please tell her the doctors need to test her for Lynch syndrome. Specifically MSH2 ex1-7. It causes multiple cancers and she needs yearly screenings [if she has it]. John passed away Feb. 14, 2023 after having 10 cancers from this mutation.”
____

When Jennifer’s message was relayed to Thrisha, her immediate response was:

“Omg. Thank you. It is amazing. I’m shaking. And the fact I may now know why I had cancer 2x is even better. I can get tested and stay on top of it. This is LIFESAVING.”

Thrisha had already faced endometrial cancer at age 35, followed by thyroid cancer just six months later.

Following genetic testing, she and her doctors finally knew why.
____

Two sisters.
Both carrying an identical pathogenic gene variant.
Both very much alike.
Neither knowing the other existed.
One knew in time.
One didn’t.
____

Today, Jennifer and Thrisha are close.

They are followed by the same Lynch syndrome specialists and now advocate together as co-founders of the nonprofit organization Lynch Syndrome Awareness, helping educate others about hereditary cancer risk, Lynch syndrome, and prevention.

A story highlighting both the lifesaving power of cascade testing — and the consequences when hereditary cancer risk goes unrecognized.

Artificial intelligence is beginning to change the future of colonoscopy surveillance for people with Lynch Syndrome — a...
05/14/2026

Artificial intelligence is beginning to change the future of colonoscopy surveillance for people with Lynch Syndrome — and the possibilities are incredibly promising.

A newly published review explored how AI-assisted colonoscopy tools, particularly computer-aided detection (CADe) systems, may help improve the detection of precancerous polyps during surveillance procedures for Lynch syndrome patients. These AI systems work in real time during colonoscopy, helping identify subtle or flat lesions that can sometimes be difficult to detect with the human eye alone.

This is especially important for Lynch syndrome because colore**al cancers can develop more quickly and may arise from lesions that are harder to spot compared to average-risk populations.

Studies in average-risk colore**al cancer screening have already shown that AI-assisted colonoscopy can improve adenoma detection rates and reduce the number of missed polyps. Researchers are now exploring whether these same benefits can improve outcomes for Lynch syndrome patients, who often undergo frequent lifelong surveillance.

While more Lynch syndrome-specific research is still needed, this review highlights a hopeful future where emerging technology could help support earlier detection, more precise surveillance, and ultimately better outcomes for high-risk families.

Progress in Lynch syndrome care is happening through research, innovation, and continued advocacy — and we will continue sharing these important developments with our community. 💙

What are your thoughts about the use of artificial intelligence in the medical world?

Read more: https://doi.org/10.1002/ijc.70496

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