Lynch Syndrome Awareness

Lynch Syndrome Awareness http://give.classy.org/Lynchsyndrome

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.

**LYNCH SYNDROME IS MORE THAN A CANCER RISK. IT CAN AFFECT HOW WE LIVE EVERY SINGLE DAY.**When people talk about Lynch s...
10/13/2026

**LYNCH SYNDROME IS MORE THAN A CANCER RISK. IT CAN AFFECT HOW WE LIVE EVERY SINGLE DAY.**

When people talk about Lynch syndrome, the conversation often focuses on genetic testing, cancer screenings, and prevention.

But what about the emotional and physical impact of living with an inherited cancer risk?

A new study explored something that deserves more attention: **quality of life among people with Lynch syndrome.**

Researchers examined 288 adults, including Lynch syndrome carriers, non-carrier relatives, and individuals with and without a history of cancer.

What they found is worth a closer look:

🔹 Lynch syndrome carriers reported lower quality of life and greater symptom burdens.

🔹 Fatigue, insomnia, and pain were among the symptoms reported.

🔹 Participants with a history of cancer experienced significantly poorer physical functioning.

🔹 The study also explored whether machine learning could help identify individuals who may need additional supportive care.

Here's something we believe strongly:

**Living with Lynch syndrome means more than managing medical appointments. It means managing the uncertainty, the worry, the physical challenges, and sometimes the emotional weight that comes with it.**

Supportive care matters. Being heard matters. And quality of life should be part of the conversation—not an afterthought.

**This research takes an important look at the human side of Lynch syndrome.**

đź’¬ Have you ever felt that the emotional or physical impact of Lynch syndrome wasn't fully understood by your healthcare team?

We'd love to hear your experiences.

đź’š You are more than your genetic test results.

Read more: https://www.sciencedirect.com/science/article/pii/S1462388926002279

Knowing your risk can open the door to a different future.It’s understandable to feel afraid of what genetic testing mig...
10/12/2026

Knowing your risk can open the door to a different future.

It’s understandable to feel afraid of what genetic testing might reveal. But knowing your inherited cancer risk can help you ask questions, explore prevention options, and make informed decisions for yourself and your family.

You don’t have to have all the answers to take the first step. We’re here to help you find where to begin.

Visit lynchsyndromeawareness.com to learn more and connect with us.

KNOW YOUR RISK. CHANGE YOUR STORY.
ONE TEST. ONE FAMILY. GENERATIONS OF IMPACT.

**COULD AI HELP FIND CANCER-PRECURSOR LESIONS THAT COLONOSCOPY MISSES?**For those of us living with Lynch syndrome, ever...
10/11/2026

**COULD AI HELP FIND CANCER-PRECURSOR LESIONS THAT COLONOSCOPY MISSES?**

For those of us living with Lynch syndrome, every colonoscopy carries a little extra weight.

We know that polyps can be subtle, flat, and easy to miss. And because Lynch syndrome can accelerate the progression from adenoma to cancer, finding those lesions matters.

So naturally, when we hear about artificial intelligence being used to improve polyp detection, we want to know:

**Could AI make our screenings safer?**

A new randomized study looked at exactly that question.

Researchers compared standard high-definition colonoscopy with AI-assisted colonoscopy in 100 people with Lynch syndrome.

The results? Interesting… but not quite what many might expect.

AI detected additional adenomas during second-look colonoscopies, but the difference compared with standard high-definition colonoscopy was **not statistically significant.**

That doesn't mean the conversation is over.

It means we need more research, better technology, and continued attention to the unique screening needs of people with Lynch syndrome.

Because when your risk is inherited, you deserve screening strategies backed by evidence—not hype.

Here's a question for our Lynch syndrome community:

If AI-assisted technology could help your doctor detect additional polyps during your colonoscopy, would you want AI used as part of your procedure?

Would you feel more comfortable knowing AI was assisting your doctor, or would you have concerns?

👇 We'd love to hear your thoughts! 💚

Read more: https://www.sciencedirect.com/science/article/pii/S1590865826009217

Knowledge matters. Early detection matters. And research that asks difficult questions matters, too.

**NO ONE TELLS YOU HOW HEAVY IT CAN FEEL TO KNOW YOUR BODY CARRIES A CANCER RISK.**You can wake up feeling completely he...
10/08/2026

**NO ONE TELLS YOU HOW HEAVY IT CAN FEEL TO KNOW YOUR BODY CARRIES A CANCER RISK.**

You can wake up feeling completely healthy…

…and still have that little voice in the back of your mind:

**“What if?”**

What if this symptom means something?

What will the next screening show?

What about my children?

What if someone I love inherited it?

Lynch syndrome isn't just appointments, procedures, and test results.

Sometimes, it's the anxiety you don't talk about.

The fear you push down.

The moments when you're tired of having to be strong.

You can be grateful for knowing your risk **and still be scared.**

You can be proactive **and still feel overwhelmed.**

You can be okay today **and still worry about tomorrow.**

**That doesn't make you weak. It makes you human.**

Let's talk about the part of Lynch syndrome that doesn't show up on a medical chart.

👇 **What has been the hardest emotional part of living with Lynch syndrome for YOU?**

Someone reading your comment may be thinking, *“I'm not the only one.”*

We’re Heading to ACG 2026 in Nashville!Why does Lynch Syndrome Awareness attend medical conferences?Because raising awar...
10/08/2026

We’re Heading to ACG 2026 in Nashville!

Why does Lynch Syndrome Awareness attend medical conferences?

Because raising awareness goes beyond reaching patients. It means educating healthcare professionals, building partnerships, and advocating for earlier detection and cancer prevention.

đź©ş Educating the medical community about Lynch syndrome and hereditary cancer risks.

Building partnerships with physicians, researchers, genetic counselors, and healthcare organizations.

🧬 Expanding access to genetic testing, specialized care, and research opportunities.

Bringing the patient voice to the forefront of healthcare conversations.

An estimated 95% of people with Lynch syndrome don’t know they have it. We are working to change that!

Every connection we make brings us one step closer to identifying more families, improving care, and saving lives.

đź“Ť ACG 2026 | Nashville, TN
📅 October 9–14
đź’™ Booth #1737

KNOW YOUR RISK. CHANGE YOUR STORY.
ONE TEST. ONE FAMILY. GENERATIONS OF IMPACT.

* Please share!*To our friends in Coral Springs — here’s a wonderful way to support Lynch Syndrome Awareness & Education...
10/06/2026

* Please share!*

To our friends in Coral Springs — here’s a wonderful way to support Lynch Syndrome Awareness & Education!

We’re incredibly grateful for this fundraiser and everyone helping spread the word. Approximately 1 in 279 people has Lynch syndrome, yet an estimated 95% don’t know they have it.

If you’re in the Coral Springs area, please come out, support the fundraiser, and help us raise awareness! Every donation and every share helps us reach another person and another family. 🧬

Know your risk. Change your story. One test. One family. Generations of impact.

LYNCH SYNDROME: MORE THAN ONE GENE!Did you know Lynch syndrome can involve several different genes? And the gene you hav...
10/06/2026

LYNCH SYNDROME: MORE THAN ONE GENE!

Did you know Lynch syndrome can involve several different genes? And the gene you have can make a difference!

Let’s break it down. 👇

**Meet the genes:**

**MLH1:** One of the most common Lynch genes, associated with increased colorectal and endometrial cancer risks.

**MSH2:** Another frequently involved gene, associated with colorectal, endometrial, urinary tract and other cancer risks.

**MSH6:** Often associated with colorectal cancer developing at older ages than MLH1 or MSH2, but endometrial cancer risk is important, too.

**PMS2:** Generally associated with lower colorectal and endometrial cancer risks than MLH1 or MSH2 — but lower risk doesn’t mean no risk!

**EPCAM:** A little different! Certain EPCAM deletions can affect the nearby MSH2 gene and lead to Lynch syndrome.

**How common are they?**

Approximate ranges reported across studies:

• MLH1: 15–40%
• MSH2: 20–40%
• MSH6: 12–35%
• PMS2: 5–25%
• EPCAM: Less than 10%

These ranges vary by study and population, so they aren’t exact percentages for everyone.

**Why does knowing your gene matter?**

Because Lynch syndrome isn’t a one-size-fits-all diagnosis!

The gene involved can affect cancer-risk estimates and screening recommendations. Even people with the same gene can have very different experiences and family histories.

And having Lynch syndrome does NOT mean you will definitely develop cancer.

🗣️ **Let’s hear from the Lynch community!**

Which gene do you have — MLH1, MSH2, MSH6, PMS2, or EPCAM?

If you’re comfortable sharing, tell us in the comments! Your experience might help someone else feel a little less alone.

**More Awareness. More Options. Stronger Families.**



đź“š Learn more:
https://www.ncbi.nlm.nih.gov/books/NBK1211/

*Sources: GeneReviews and MedlinePlus Genetics. Percentages are approximate and vary by study. Screening recommendations should be personalized with a healthcare professional.*

Regina Villas BĂ´as LeiteMLH1 | Colorectal Cancer SurvivorI am from Brazil and lived in the U.S. some years ago to fulfil...
10/03/2026

Regina Villas BĂ´as Leite
MLH1 | Colorectal Cancer Survivor

I am from Brazil and lived in the U.S. some years ago to fulfill my studies in Plant Pathology at the University of Florida. Last year, 15 days after my 60th birthday, I was diagnosed with colorectal cancer. I underwent surgery and chemotherapy. Now I am doing well, currently under oncological follow-up. I am at least the third generation in my paternal family to have colorectal cancer, following my grandmother, my father, and my brother.

Given my family history, my surgeon suspected I might have Lynch Syndrome, a suspicion confirmed by a genetic test positive for MLH1 gene. Knowing I carry the syndrome allows me to be more vigilant regarding screening, symptoms, and prevention of associated tumors.

My children are undergoing genetic testing, which will enable them to understand their risks and take preventive measures. I believe science is advancing rapidly toward offering us vaccines to prevent tumors in the future, thereby breaking the cycle of cancer that has affected our families for so long.

FACES OF LYNCH SYNDROME
One Family at a Time
Our Genes. Our Stories. Our Future.

HeatherBRCA1 & PMS2 | PrevivorMy Previvor StoryI never expected a lump in my breast to lead me down this path. Thankfull...
10/03/2026

Heather
BRCA1 & PMS2 | Previvor
My Previvor Story

I never expected a lump in my breast to lead me down this path. Thankfully, the lump turned out to be fine, but because of my family history, my doctor recommended that I have genetic testing done.

That decision changed my life. My genetic testing showed that I carry both a BRCA1 mutation and a PMS2 mutation associated with Lynch syndrome. Suddenly, I had information about my health and my future that I couldn't ignore.
At 37, I made the difficult and very personal decision to be proactive. I underwent a bilateral mastectomy and a total hysterectomy to reduce my cancer risk. These weren't easy decisions, but for me, knowing my genetic risks gave me the opportunity to make choices before cancer made those choices for me.

Today, I am proud to call myself a Previvor.

The biggest thing I have learned through this journey is the importance of being your own advocate. Ask questions. Know your family history. Listen to your body. If something doesn't feel right, speak up. And if genetic testing or preventive screening is recommended, don't be afraid to learn more about your options.
Knowledge can be scary, but it can also give us the power to make informed decisions about our health.

My advice: Be your own advocate. Know your risks. Get your screenings. And never be afraid to speak up for yourself.

FACES OF LYNCH SYNDROME
One Family at a Time
Our Genes. Our Stories. Our Future.

RachelLynch Syndrome | PrevivorI found out that I had Lynch syndrome at a very young age, after my aunt was diagnosed wi...
10/03/2026

Rachel
Lynch Syndrome | Previvor

I found out that I had Lynch syndrome at a very young age, after my aunt was diagnosed with colon and uterine cancer in her late 30s. Since then, my life has been filled with medical tests, scans, and painful biopsies each year.

When I first learned about my diagnosis, I was in high school. I wasn’t in disbelief—I simply didn’t fully understand what it meant. I was a senior looking forward to a major life transition and everything that came with it. Over time, that distance gave way to the reality of living with Lynch syndrome.

I’ve come to realize how fortunate I am to live in a world where we have access to genetic testing, regular screenings, scans, and preventive measures. They are not perfect, and there is still so much work and research to be done, but these tools have given me a sense of realism, preparedness, and confidence as I move forward.

My biggest takeaway from discovering this life-altering news at such a young age is the importance of connection. Connect with others who understand what you’re going through. Find a medical team that listens to you, understands your diagnosis, and supports you. Most importantly, ask questions.

You are not alone. Speaking up, sharing your experiences, and asking for support can help build the connections that make navigating Lynch syndrome a little less overwhelming.

You deserve a full life—not one defined by fear, but one shaped by awareness, connection, and the choice to keep moving forward.

Lynch is not the end game. It’s a reminder that your body—and your mind—are worth protecting, caring for, and fighting for. So face the invasive scans. Endure the endless tests. Do the hard things that keep you here.
You’re worth it.

FACES OF LYNCH SYNDROME
One Family at a Time
Our Genes. Our Stories. Our Future.

Address

1201 W Peachtree Street NW, Ste 2625 #317534
Atlanta, GA
30309

Telephone

+14046356130

Website

,

Alerts

Be the first to know and let us send you an email when Lynch Syndrome Awareness posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Lynch Syndrome Awareness:

Shortcuts

Featured

Share

Category