Maryhelen: A sister committed to a promise

March 22 is officially recognized as National Lynch Syndrome Day.

There are a number of hereditary conditions that can increase the risk of colorectal cancer (CRC), but Lynch syndrome is the most common, with about 3 to 5 percent of CRC cases are caused by Lynch syndrome, according to the National Institutes of Health.

People with Lynch Syndrome inherit an increased risk of cancer and routine colonoscopies are recommended. Knowing your family health history is imperative to managing this condition because it’s passed from generation to generation.

Unfortunately, there aren’t usually any symptoms associated with Lynch syndrome, and too many people learn they have the condition after it’s too late. When Maryhelen’s brother, Anthony, was diagnosed in his early 30s, her family learned first-hand the importance of knowing your family health history.

“My brother was 36 when he passed away,” she said. “He didn’t have any of the typical symptoms—no abnormal bowel movements, no blood. He put off going to the doctor because he didn’t have insurance. In September of 2013 he was diagnosed with ulcerative colitis, given antibiotics, and told to watch his diet. That same year on Christmas Day, he passed out. Things got worse after that.”

After symptoms associated ulcerative colitis continued, Maryhelen’s brother was back in the emergency room. A colonoscopy was performed and a large tumor was found. He was immediately diagnosed with stage IV colorectal cancer. After complications from the surgery three days later, he woke up from his final surgery with an ostomy bag. Maryhelen and her brother were shocked and couldn’t understand how this happened. With a little bit of family health investigating, the story started to become clear.

“We asked our mom, Cleo, about our family history. She reached out and gathered information and it was determined that many family members had suffered from or died from colorectal cancer. We knew our uncle had died, but we could not believe how many other people had colorectal cancer in our family.”

Her brother’s physician recommended genetic testing, even suggesting, “There’s no way this many people in your family have had this and it’s not hereditary.” A test on his tumor sample was ordered and it was determined that he did in fact have Lynch Syndrome, specifically the MSH2 gene. Maryhelen, her mother Cleo, and her two nephews were tested. Maryhelen, Cleo, and her nephew, Cyrus, tested positive for Lynch Syndrome.

Maryhelen’s brother was in the hospital for 67 days before passing, and Maryhelen was with him 64 of those days. She made a promise to him to keep his children healthy and to make sure they were screened. She is committed to that promise.

“I immediately started looking for ways to get Cyrus tested without it costing us everything we had. He didn’t have insurance. We found the Colorectal Cancer Alliance and put him on a waiting list to be screened. He got the call this March, during National Colorectal Cancer Awareness Month. Convincing a 20-year-old boy to get a colonoscopy isn’t the easiest thing I’ve ever done, but a promise is a promise and he had his first colonoscopy Monday, March 19. Thankfully he had no polyps, but he needs to go every year.”

Having a family hereditary condition isn’t easy, but knowledge of the condition is empowering. “Knowing that you have this gene and being able to stay on top of it is a gift. Early detection is what’s going to stop our family from being in my brother’s situation.”

During March, the Colorectal Cancer Alliance is partnering with Olympus to schedule and screen fifty people across the nation, in an effort to save lives. Maryhelen received a call from the Alliance this month and the call was met with gratitude and excitement. “I’m so grateful we were given this chance.”

To speak with someone about Lynch syndrome, call our national hotline at 1-877-422-2030. You can also connect with an entire colorectal cancer community in our online Facebook group, Blue Hope Nation.

In March, we observe National Colorectal Cancer Awareness Month. Join us as we build our nation of passionate allies, fiercely determined to end this disease within our lifetime.

A very warm thank you to Olympus for this partnership.

Angelina McIntire: Activist taking on a national epidemic

When you grow up in the DC metro area, you learn first-hand how politics and and policy shape the nation. Living near the nation’s capital, it is commonplace to have dozens of friends, family, and neighbors deeply rooted in occupations and hobbies involving politics. Angelina McIntire knows this well.

Having grown up in Virginia and working as an international development professional in DC, politics was a way of life for Angelina. From grassroots advocacy to on-the-ground campaigning, Angelina embodied the DC political lifestyle.

Shortly after her 40th birthday in the fall of 2016, Angelina experienced a week of curious symptoms including back pain, front pain, gas, and bloating. She intuitively knew something wasn’t right.

“I’d get stomach aches off and on since my 20s,” Angelina said, “and I’d seen gastroenterologists’  who continually diagnosed me with irritable bowel syndrome. I have always had minor stomach issues and after that terrible week of gas and bloating everything went down the rabbit hole.”

The fall of 2016 was all about campaigning in Washington, DC. The city was gripped with anticipation of who would be the next president. Angelina was simultaneously occupied with the uncertainty of her life. During her scheduled colonoscopy following her week of symptoms, a tumor in her sigmoid colon was discovered.

“At that point we knew it was a likelihood of cancer,” she says. “My first reaction was how on earth did this happen? No family history, no consistent symptoms, totally healthy lifestyle. It just kind of blew my mind.”

Angelina, ever the resolute advocate, was campaigning the day of the election after her scheduled colonoscopy. “I was about to face a major health issue but I was still out there,” she said. From there, she was unstoppable, scheduling a scan on inauguration day and marching with peers to fight for healthcare.

“With the whole debate over the healthcare, my heart was broken. It’s scary. Anyone can go from healthy to sick overnight. Being afraid of things like pre-existing conditions isn’t fair. It led me to really have greater empathy. You see people out there saying ‘healthcare is an individual responsibility,’ but there are plenty of us who take amazing care of ourselves and we still get cancer. None of us know what lies in store for us. It’s amazing how fine that line is between being healthy and not healthy.”

When Angelina was first diagnosed she felt good. She was optimistic and, with the support of her husband and parents, she was ready to get back to a normal life. She did chemo, went on a work trip to Africa (including a safari), began socializing again, and assimilated back to the eventful DC metro lifestyle.

After a successful, hopeful surgery in March 2017, her doctors felt confident the cancer was completely removed and she was ready for a fresh start. However, things soon thereafter dramatically fell apart. Angelina wound up in the hospital with a small bowel obstruction, resulting in another hospital stay. From there, several grueling side effects took place and eventually another bowel obstruction occurred resulting in another surgery and a multiple week hospital stay.  

“With every bit of news I felt like I’d fallen down this rabbit hole where there’s no exit, both on a personal note and societal note too,” she says. “You treat the cancer and five other things pop up. I had a plan and the plan fell apart.”

This past November, Angelina experienced a recurrence in her liver and lungs and learned the cancer is no longer curable. Over the holidays, with the support of her family, she decided to go back on a much less aggressive form of chemo to hopefully keep the disease stable while exploring clinical trial options. Despite the recurrence, after months of constant struggling and going through insomnia, and even depression, Angelina was able to get herself back to a stronger place.

“I’m not willing to sacrifice quality of life again,” she says with gratitude. “You always think it’s not going to happen to you. It parallels the path that, being in DC, you feel all the political stuff so much. I’m hopeful that some aspects of the world will right themselves, and I just hope for the best for myself, day in and day out. I don’t believe things happen for a reason, but I do believe we make reason for things, and out of that can come good, no matter what the outcome for ourselves.”

Yesterday was the thirteenth annual DC Scope It Out in Washington, DC. Angelina was a true crusader, attending with an entire team of advocates, continuing her passion to champion for all. During the event she was a survivor speaker and even raised over $17,000 for the DMV community.

To learn more about Angelina’s story or early-onset colorectal cancer, visit You can also reach out to the Colorectal Cancer Alliance’s Never Too Young Manager, Kim Newcomer.


In March, we observe National Colorectal Cancer Awareness Month. Join us as we build our nation of passionate allies, fiercely determined to end this disease within our lifetime.   


Colorectal Cancer Alliance Shines Light on Why Young Individuals Are Being Misdiagnosed

The Faces of the Misdiagnosed

March is National Colorectal Cancer Awareness Month

Colorectal Cancer Alliance Shines Light on Why Young Individuals Are Being Misdiagnosed

Washington, D.C. (March 1, 2018) – Doctors told Tawny Mack, now 31, that she probably had hemorrhoids. Stephen Estrada, then 28, was twice misdiagnosed with constipation. Tracy Gaither, 42, was told she had parasites. Fawn McAdie at age 28 was told that she was working out too hard. In the end, they were all diagnosed with colorectal cancer.

“I knew that something wasn’t right,” Gaither said. “And I just kept pushing my doctor until he said, ‘You need a colonoscopy.’ People have to advocate for themselves.”

To help raise awareness about young individuals being misdiagnosed as part of National Colorectal Cancer Awareness Month, national non-profit the Colorectal Cancer Alliance recently conducted a survey of individuals under the age of 50 who were diagnosed with colorectal cancer.

Results showed a population of survivors who often faced barriers to screening due to their age, were most often misdiagnosed at the start of their journey, and then received a diagnosis of late-stage colorectal cancer—a disease that is highly treatable if caught early.

Out of the 1,600 young onset colorectal cancer survivors (under age 49) from around the world who took the survey, the results revealed that:

  • 82% of individuals were initially misdiagnosed

  • 73% were diagnosed at a later stage

  • 50% felt their symptoms were ignored

  • 62% did not have family history

  • 67% saw at least two doctors before diagnosed

“Each and every day we meet men and women across this country that are diagnosed with colorectal cancer at way too young an age,” said Michael Sapienza, CEO of the Colorectal Cancer Alliance. “The Colorectal Cancer Alliance is dedicated to finding out why this is happening and moving towards action of raising awareness for screening, and funding research to end this within our lifetime.”

Young Onset Statistics & Warning Signs.  Colorectal Cancer doesn’t care about age and doesn’t just strike the older population. Currently, one in 10 individuals under the age of 50 are being diagnosed with colorectal cancer. According to the American Cancer Society, the incidence rate in people younger than 50 is increasing, from 6% of individuals younger than 50 in 1990 to 11% in 2013. By the time of correct diagnosis, in many occasions, the cancer has progressed to the advance stages. The Colorectal Cancer Alliance has committed $1 million to young onset research in 2018 and continues to educate about early detection,  establishing an open dialog with physicians to achieve correct diagnosis and screening options.

Warning signs of colorectal cancer includes:

  • Anemia

  • Rectal bleeding, dark or black stool

  • Change in bowel habits,

  • Diarrhea and/or constipation

  • Narrowing of stool

  • Abdominal discomfort (cramps, gas, pain, bloated)

  • Unexplained weight loss

  • Weakness/fatigue

  • Nausea or vomiting

Colorectal cancer is the second leading cause of cancer related death in the United States. This year, it is estimated that more than 135,000 Americans will be diagnosed with colorectal cancer, and nearly 50,000 will die from the disease. In its early stages, colorectal cancer is highly treatable, with a five-year survival rate of 90%, making it a stoppable and preventable disease through early detection. It is estimated that 1.7 million new cases are expected in 2018 according to the American Cancer Society.

The Colorectal Cancer Alliance’s mission is to end colorectal cancer within our lifetime through providing support services, awareness of preventive measures, and funding critical research. The nonprofit is hosting several events and initiatives during the March awareness month:

National Dress in Blue Day (March 2) – The Colorectal Cancer Alliance first launched the National Dress in Blue Day program in 2009 to bring national attention to colon cancer and to celebrate the courage of those affected by this disease. Today, individuals, businesses and community groups across the country participate in National Dress in Blue Day by wearing blue and encouraging others to do the same.

Undy RunWalk and ScopeItOut 5K – Throughout the year, the organization hosts over 20 fundraising run/walk events in major cities throughout the United States, with the largest race in the series taking place in the Nation’s Capital this month on March 18th.

Nationwide Colonoscopies – Honoring their vision of a world free of colorectal cancer within our lifetime, the Alliance will schedule and cover 50 colonoscopies nationwide to individuals across the country.

Every Ally is a Hero – During the month of March, the Colorectal Cancer Alliance will launch its “Every Ally is a Hero” campaign – highlighting 31 allies (one ally each day) of those who have been diagnosed with colorectal cancer from across the United States. Profiles of the survivors, patients and/or caregivers personal stories and journey will be featured on and on The Alliance’s social media.

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventive screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit


About Dress In Blue Day

Dress in Blue Day began with Anita Mitchell. Ms. Mitchell was battling stage IV colon cancer and had lost a close friend and father to the disease. She saw a need to bring greater awareness to a cancer not many people wanted to discuss. Ms. Mitchell is a founder of Colon Cancer STARS and a volunteer for the Colorectal Cancer Alliance. She brought the Dress in Blue concept to the Colorectal Cancer Alliance in 2009. The Colorectal Cancer Alliance expanded this concept into Dress in Blue Day, a national celebratory day to raise awareness of colorectal cancer, specifically highlighting the spirit and courage of survivors and their families, and honoring the memory of those lost to the disease. Today, individuals, businesses and community groups across the country participate in National Dress in Blue Day by wearing blue, raising funds and motivating others to do the same, all in the name of awareness.

Kendra Mitchell: Healing by giving back

As a stage-I colon cancer survivor and prevention advocate, Kendra Mitchell, 38, says she’s a rare breed.

“There aren’t enough early stage survivors who are advocating, and that confuses me,” she said. “I guess if something like this happens, you want to move on with your life and forget about it.”

But Kendra didn’t. Instead, she became involved in the Denver Undy RunWalk. The Undy is a 5K run/walk and one-miler that aims to get the conversation started about colorectal cancer and raise funds for research, prevention, and patient and family support.

Kendra volunteers as a co-chair on the Undy Engagement Committee, a group of volunteers that helps plan the event.

She also joined the Never Too Young Advisory Board, a volunteer organization addressing the concerns and needs of young colorectal cancer survivors, who are often overlooked due to their age because it’s typically seen in adults over 50 years old.

She attributes her passion and volunteerism to two points. First, she felt a sense of responsibility.

“Initially, I felt like so many people reached out to help me that I’d love to be able to give back,” she said.

And then, after she became involved with the Denver Undy RunWalk community, she realized something else.

“Instantly I realized that the Undy was a huge part of my healing from the disease that I didn’t know I needed,” she said. “Here was this whole community I didn’t know I needed.”

After her diagnosis four years ago, Kendra said she was in shock. She didn’t panic. She didn’t cry. She didn’t even notice something was amiss until months later, when she wasn’t eating like she once did.  

“I felt that when your physical recovery is over, then all of it was over,” she said. “But it probably wasn’t until that moment that the mental stuff started. So that has been the journey of the last yearworking on my mind, my heart, and my body as well.”

Before cancer, Kendra was a self-described workaholic and ladder climber. She worked as a project manager, opening up makeup stores and dentist offices across the country, traveling three weeks out of the month.

“I just wanted the next promotion, and I was killing myself to get it,” she said. “And now, I’ve taken a step back.”

Today, she works at the largest volunteer-driven, non-profit health and education program in the nation, 9Health Fair, giving people the tools to own their health

Kendra says she was lucky. She considers herself a poster child of what can happen when doctors recognize that young people can get colorectal cancer, too. Even after ignoring symptoms for nine months, like she says young people have a tendency to do, it all turned out OK.

“All the things fell into place the way they should, and I had a relatively easy experience,” she said. “I hear so many times people my age were misdiagnosed for years and years.”

Indeed, 11% of colorectal cancer patients are under age 50, and an Alliance study showed 82% of young-onset patients were initially misdiagnosed.

With the Denver Undy RunWalk coming up, Kendra hopes to instill a sense of awareness among young people and physicians.

“My big thing has been listening to your body,” she said. “I just kept making excuses and ignoring it because I was working on other things. Hopefully my personal story will help clinicians out there think that they better check for cancer.”

In March, we observe National Colorectal Cancer Awareness Month. Join us as we build our nation of passionate allies, fiercely determined to end this disease within our lifetime.  

Anita Mitchell: Bridging the gap to awareness

In 2006, Anita Mitchell was in a room full of public health officials and doctors. A stage IV colon cancer survivor, she was part of a Washington state colon cancer task force, and they were brainstorming ways to raise awareness.

Anita suggested that everyone should wear blue on a specific day in March, but the task force seemed perplexed.

“Here was this soccer mom coming up with this idea,” she recalled. “They didn’t really get it.”

At the time, Anita had two children in school at Holy Rosary in West Seattle, and she was at least the third parent in their 40s who had experienced colorectal cancer. One of her good friends, another school mom, had died from the disease at 37 years old.

So she took the wear-blue idea to the school’s principal, who was hesitant. Students’ parents get breast cancer and other diseases, too, the principal said, and the school needed to be sensitive to all. Anita was resolute, however. To her, this was simple.

“I said, ‘This is a problem, screening is not recommended for this age group, and they have to know the symptoms and how it’s preventable,’” Anita said. “I had to sell the principal on it, and that’s what I did.”

The first Dress in Blue Day took place on March 8. The whole school swapped plaid uniforms for blue jeans and blue shirts. Hundreds of students, excited and aware, brought dollars for colorectal cancer advocacy and educated the community when they posed for the newspaper at the end of the day.

Now, more than a decade later, Dress in Blue Day has become a national event, supported by the Colorectal Cancer Alliance and observed by thousands of allies. Dress in Blue Day is observed today, March 2.

Dress in Blue Day lets allies everywhere help end colorectal cancer, while honoring and remembering those who have struggled with it. In 2018, more than 135,000 people will be diagnosed with this highly preventable disease.

Dress in Blue Day also starts a conversation.

“Colorectal cancer is not something people want to talk about,” Anita said. “But I want people to talk about it. Had I known the symptoms or my family history, I would have demanded a screening and maybe my cancer would have been found at a more curable stage.”

Flashing back to the day after Holy Rosary went blue, Anita knew she had to keep the momentum going. She knew she had to get media attention. But doing so took pounding the pavementliterally.

In 2007, Anita went to the mayors of Seattle, Tukwila, and Port Angeles and received proclamations for Dress in Blue Day. Businesses and health organizations across Washington participated. The Port Angeles newspaper published a half-page interview.

The following year she went to Fall Citypopulation 1,993and walked door to door. By the third house, she found someone whose life had been impacted by colorectal cancer. She invited the local newspaper to cover the story for Dress in Blue Day.

“By then, I was a nonprofit, and we had screening cards, and I got the paper to cover that, too,” Anita said.

This year, Anita is going big. The 520 Bridgethe longest floating bridge in the worldwill be lit blue, and allies from across the Pacific Northwest will come together.

“That’s a huge milestone for me because I’ve always wanted things lit up in Seattle,” she said. “It’s about bridging the gap to awareness.”


In March, we observe National Colorectal Cancer Awareness Month. Join us as we build our nation of passionate allies, fiercely determined to end this disease within our lifetime.  

Weez Altomari: A way to remember and honor our son

In April 2005, doctors diagnosed Weez Altomari’s son, Greg, with colorectal cancer. He was 34 years old at the time, and part of a disturbing trend of under-50 adults getting colorectal cancer at increasing rates.

The battle against colorectal cancer was long and difficult for Greg, Weez says. Over three years, he had surgeries, multiple rounds of chemotherapy and radiation, and even a stay at the Mayo Clinic in Minnesota, far from the Altamari’s Denver home.

All cutting-edge treatments available at the time were used in his battle, Weez says. At last, four consecutive PET tests showed no evidence of disease in Greg. Doctors declared him “NED”probably the best of all medical acronyms.

“We all thought that, finally, he had jumped that hurdle,” Weez remembers.

But the cancer returned in 2008. With great courage, Weez says, Greg made the decision to stop treatment. He moved in with Weez, a former nurse, and her husband, Alto. Greg died on February 23, 2009.

The Altomari’s were left numb.

“Everything we had to give, we’d given to Greg,” Weez says. “All his physical, emotional, and spiritual careeverything that we had inside of us, we gave to him, and I was running on empty.”

But while Weez and Alto could not immediately 

move on in the face of their son’s death, Greg’s friends started celebrating his life.

They began with a fundraiser for a memorial bench in City Park. Greg’s friends channeled his love for the X Gamesan Olympics-like competition for extreme sportsholding the “G Games,” with a golf club throwing contest, drop-kick basketball contest, and barbecue.

The event continues annually, and the City Park bench bearing Greg’s name overlooks an iconic view of Denverthe lake at City Park, the gold dome of the capitol building, and the Rocky Mountains.

Several friends named their children after Greg, too. Around the US, Weez says, you can find boys named James Gregory, Tobin Gregory, Wiley Gregory, and Mac Gregory. Unfortunately, Greg never got to meet his namesakes.                       

“So we started to see how other people were celebrating our son,” Weez says. “We were kind of paralyzed, and that’s not a good place to be.”

But then, after a while, things changed.

“I decided I had to do something because I was having trouble moving forward and finding a purpose,” Weez says. “What could I do with this tragedy? You can get off your butt, and go do something for someone else.”

Weez placed a call to the Colorectal Cancer Alliance, which was then called the Colon Cancer Alliance. The Alliance connected her with the Denver Undy Engagement Committee, a group of volunteers that helps plan the Alliance’s Denver Undy RunWalk.

The Undy is a 5K run/walk and one-miler that aims to get the conversation started about colorectal cancer and raise funds for research, prevention, and patient and family support.

After two years of volunteering“dipping in my toes,” Weez saysa turn of events allowed her to step in as chairwoman, with her husband, Alto, by her side for every step. Together, they and the committee have worked to develop the Denver RunWalk into one of the largest in the country.

All Undy’s have an inflatable colon, but Weez added a giant inflatable roll of toilet paper, too.

Another year, she had a friend stitch a giant 15-foot-wide pair of boxers. Dozens of people could fit inside for team photos.

Last year, Weez wrote an Undy song, a take on “Go Cubs Go” from the 2016 World Series, with participants chanting, “Go, butts, go! Hey denver what do you say? This cancer is going to lose today! “

“It’s been very healing for me and my husband,” Weez says. “It’s given us a purpose, a way to remember and honor our son. It’s given Greg’s life more purpose, too, because we’re trying to prevent young people from getting colorectal cancer.”

Weez says the Undy RunWalk has a made a difference in Denver. People are more aware of colorectal cancer and its symptoms.

“People running around in their boxers gets people talking in a fun setting,” Weez says. “They can learn the signs and symptoms and talk with other people. They learn that, yes, I better find out my family history.

This month, as the buildings light up blue in Denver, they’ll light up for Greg, Weez, Alto, and all who are impacted by this disease.

In March, we celebrate National Colorectal Cancer Awareness Month. Join us as we build our nation of passionate allies, fiercely determined to end this disease within our lifetime.  


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