Courtney Forget: Only rainbows after rain

Courtney Forget was created to create. As an elementary school art teacher to 800 students, Courtney inspires minds and uses humor to encourage everyone around her. Even with the diagnosis of stage four colorectal cancer, her ability to marry art with humor never took a backseat.

In September of 2014, Courtney experienced uncomfortable digestive issues, particularly diarrhea. She changed her diet and didn’t think it was a big deal. In an effort to be in prime condition for the upcoming wedding to her college sweetheart of eight years, she gave a stool sample to be extra safe. The feedback she received from her doctor was simply “just eat a salad more often.” She was married in October of 2014 but within the year was still experiencing symptoms. The school year was wrapping up but she could barely keep up. With exhaustion approaching an unbearable level and lots of pain and blood in her bowels, she demanded a colonoscopy.

Coming out of the colonoscopy, and still under influence of anesthesia, she jokingly asked the doctor, “What? Did you find cancer or something?” The next day, while visiting her parents, she received the final news. She was diagnosed with metastatic cancer. “I had no idea cancer could be in your colon,” she says. “It was the only time out of the last few years that I cried.”

Her co-workers, students, and entire school were there every step of the way. On the night of November 6, 2015, Courtney underwent her first surgery while her school simultaneously hosted a spaghetti fundraiser in her honor. When she had to leave early for cancer center appointments, it was often the parents of her students who were driving her. A second grade teacher from her school shaved her head when the time was right and the students loved the colorful wig she wore. “I could definitely feel the love.” Courtney made a commitment to herself and to her kids to be upfront and honest throughout the entire process.

“Kids are intuitive, they know when things are wrong.” Courtney sat down with each class and described her port, the disease, and what she was experiencing, using art to draw diagrams for them to understand. “I wanted to make sure I answered every single question.”

Courtney’s journey, particularly as a teacher, was not an easy one. Not only was there surgery but she was hospitalized multiple times and suffered from pelvic radiation disease, blood clots, and fever. She experienced pain regularly, and became dehydrated more often than not. “My job was never guaranteed and that was a very scary thought for me.” She endured bouts of depression only to learn that the chemotherapy prematurely kicked her into menopause. “You’re teaching full time but struggling. I was depressed and going through menopause at the same time. Menopause at 31 was interesting. I was exhausted and dragging.” Still, through all of her struggles, she found humor in her situation.

Her creative outlet, an online blog, was a way for her to capture and share her experience. The blog was positive but real, highlighting embarrassing moments with a rawness, and was met with praise. “I wanted people to laugh with me and treat me like I’m normal. I saw people shy away. I didn’t want the pity. I couldn’t do it. I don’t like how people treated me with white gloves. That’s not who I am.”

Art enables you to find or lose yourself. Courtney found art within every step of her journey. She rocked a colorful rainbow wig for the six month of chemo treatments and even bedazzled her ostomy bag, comically referred to as “Miss Jellyroll.” She celebrates her favorite piece of art, a blue heart tattoo next to her port scar every day. “It’s a permanent, significant milestone of ‘we did it.’ I have so many scars on my body and I wanted to add one on my own.”

For this year’s Dress in Blue Day, Courtney encouraged her entire school to participate and wear blue. She attended the DC ScopeItOut 5K in Washington, DC on March 18th. She is living the life she deserves, choosing rainbows (in the form of a wig) over rain. “Even in the dark days, I love humor. I love making people laugh. I love making things ridiculous. I feel like the cancer was never really about me. I needed people to see it in a certain light with me. I need people to be on the same page with me. I don’t want all of the sadness for my cancer right now.”


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.


Joe Kastura: Advocate passionately, inspire consistently

People are inspired to advocate for a variety of reasons. From policy initiatives to a cause close to home, the motivation to advocate passionately can lead to a lifetime of inspiration and change.  

Six years ago Joe Kastura learned that his sister, April McDonald, was diagnosed with stage 3b colorectal cancer at the age of 43. He was shocked. “When she first told me she had cancer the first thing that came to my mind was breast cancer,” he said. “I was taken back a little bit because I didn’t know anything about colorectal cancer. I didn’t really understand what that cancer was.”

Joe and April were always very close. They lived a mile apart almost their entire lives and connected daily via text or phone calls. “Next to my wife, she was my best friend.”

When April was diagnosed, her relationship with her brother grew even closer. “I became involved and really learned as much as I could.  Just watching my sister go through it inspired me to become engaged.”

The same year April was diagnosed, Joe learned about a local colorectal cancer awareness event, ScopeItOut 5K, now called Undy RunWalk in Detroit. He created a team for his sister, “Team Cookie” and all of their friends and family came out for the big event. With photography being a hobby for Joe, he was the designated volunteer photographer and continues to be to this day. The excitement and momentum for the event continued on for many ScopeItOut events. For the first couple years “Team Cookie” was the largest team with the largest amount raised. They’re currently running a 50+ team every year.

Joe’s willingness to advocate on behalf of his sister didn’t stop with ScopeItOut. He created a “Team Cookie” Facebook page for April as an avenue for her friends and family to stay in communication with her. “She didn’t have to send daily updates to hundreds of people. She didn’t have to repeat herself 100 times, 200 times, with the same message, especially when it wasn’t a positive message.” That group is still active today. April passed away in February of 2018. Up until the last month and a half she was posting updates to friends and family. She was committed to staying involved and advocating to the community.

April was a huge advocate with many colorectal cancer support groups. She called on congress, attended several conferences, and talked to anyone freely about her diagnosis. “She was a fighter. She fought to the last couple weeks of her life. She fought to the end. That led me to be proactive too.”

Joe turns 46 next week and he’s had 2 colonoscopies since his sister was diagnosed. “When I was younger I was not exposed to cancer. I could never see myself as someone who would fight the fight for better words. But I see myself being involved with the Alliance forever. Cancer took somebody from my family- my best friend. I see myself being completely involved somehow and some way, always.”

To learn more about being an advocate call our national hotline at 1-877-422-2030. Learn more about upcoming awareness events here. 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.

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.

Jaione Axpe: When life becomes complicated faster than anticipated

Professional actor Michael J. Fox stated that “family is not an important thing. It’s everything.” For caregivers, this statement rings true.

When a person is diagnosed with colorectal cancer, his or her whole family is affected. From understanding the details of diagnosis to preparing for an uncertain outcome, life becomes complicated faster than anticipated.

Caring for someone through a chronic illness requires patience, persistence, hope, and commitment. Jaione Axpe, wife of stage IV cancer patient, Scott Wilson, knows this firsthand.

Jaione and Scott’s long-distance romance lead to Jaione moving from Spain to be with Scott in the UK. Their love continued and they were married with two children over time. In 2015 they moved to the United States for a career move, and from there everything moved quickly.

Scott was diagnosed with stage IV colorectal cancer in August of 2016. Learning of the severe diagnosis was not easy.

I wasn’t expecting that outcome. It was the worst I’ve feltever,” she said. “We moved to the United States only a year before and we just started to settle. We left our life behind, our friends, and family. You’re thinking, oh my god, what’s going to happen? The kids are young, I’m young, and Scott is young. You go to that place when you’re completely alone. You have a moment like, if anything happened to Scott, what will I do?”

The realization of what could happen to Scott, to her marriage, and to their children’s future was daunting. Being reactive was never an option. Jaione committed to keeping life for her husband and children as normal as possible. “When we agreed to tell the kids it was a tough moment. They were only 11 and 15. They were familiar and knew the severity of diagnosis but we were trying to explain it and give it a positive outcome. At the time you think, “how you are you going to make them feel okay?” You forget about yourself.”

Keeping a level of intimacy around the diagnosis was a constructive way Jaione was able to care for her family while remaining positive. “We weren’t secretive, but we kept things personal. Very few people knew about it. We didn’t share via social media and didn’t really tell anyone. I remember telling a couple of old friends and sharing what was going on. Everyone was in the same state of shock as we were.”

Jaione made it her mission to support Scott every step of the way, never missing a doctor’s appointment or scheduled, six-hour chemo treatment. “Since his diagnosis, we became inseparable. I wake up thinking a year has passed and he’s here. There’s obviously days when you get a bit down but they’re less and less. Now we are making plans, planning holidays, and making our lives as normal as possible.”

Having the experience as a caregiver to a stage-IV cancer patient gave new light and appreciation for Jaione. “The amount of time spent going to doctor’s appointments, treatments, and operationsthat’s a heavy toll for a caregiver. But I do feel that some people are alone and I think that’s one of the worst things to be alone during that time. I’m willing to go with someone to chemo if they need it. Some people don’t have anybody.”

Jaione remains optimistic for Scott’s health and for her family. “It’s frustrating not having control over it. You have to be positive but very realistic. I’m feeling really good at the minute!”


If you are a caregiver or would like to connect with a caregiver who knows what you are going through, reach out to the Colorectal Cancer Alliance. To learn more about programs that can help you along your path, reach out to Nancy Butterfield, Director of Patient & Family Support with the Colorectal Cancer Alliance.

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.   


Jeremy Dranikoff: If we can save people, we should

After 16-year-old Jeremy Dranikoff’s mom passed away two years ago, he thought about ways he could remember and honor her. Inspiration came from one of his two younger sisters, Rebecca, last December.

A year prior, they had participated in the New York City Undy RunWalk, a 5K series organized by the Colorectal Cancer Alliance that raises awareness and support for our programs. Rebecca thought they could do something similar in memory of their mom.

“She wasn’t quite sure how to attack the idea because she’s younger than me, but she knew that I had the drive to get it done,” Jeremy says.

With the help of a few adults, including friends of their mom and their father, Lee, the siblingsJeremy, Rebecca, and Abbysprung into action to make the race happen.

Jeremy recorded a Facebook video, in which he tells supporters that 50,000 people die every year from colorectal cancer, despite being one of the most preventable diseases. Ninety percent of cases are treatable when caught early.

Led by Jeremy, the trio hung posters at the high school and businesses in downtown Millburn, New Jersey. They installed lawn signs, posted to social media, and talked to their classes. Jeremy even coordinated with his school’s athletic director and principal. Around race day, teachers let him make up homework that he didn’t have time to complete.

“It was a full-blown effort because we had only six weeks to get as many people there as possible,” Jeremy says.

Jeremy even spoke at a board of education meeting and was interviewed by Tap Into Short Hills, the local newspaper.

His dad, Leewho is an Alliance board memberhelped with the finances and marketing.

“He had the spreadsheet, looking at how much different things would cost because, quite frankly, I don’t know how to use excel that well,” Jeremy says. “I definitely wouldn’t have been able to do it without him.”

When South Mountain Dog Park filled with hundreds of people in memory of Jeremy’s mom, Joanna, he couldn’t believe it.

“She affected so many peopleso many people I didn’t even know she affected or knew,” Jeremy says. “And I only know this because of the people who showed up to the race.”

Even with temperatures in the mid-30’s, and after a severe storm had knocked down trees and cut power around town, 400 participants came to walk or run in the March Fourth 5K. They had so many people, they ran out of giveaway beanie hats, emblazoned with the March Fourth 5K logo.

“Seeing this many people in one location around something this important to me, that was amazing,” Jeremy says. “I had a friend come from out of state, my entire baseball program showed up. Anybody you could think of that I know made their best effort to come, and it was incredible.”

In all, the race raised about $30,000, an incredible feat for first-time event planners. Even Saint Barnabas Hospital exhibited at the event, sending a nurse who handed out resources and signed up attendees to receive colorectal cancer screenings.

“If my mom was screened at 40, who knows what would’ve happened?” Jeremy says. “If it’s in our power to save these people, then we should do it.”

Jeremy says the goal of the race wasn’t to find a cure. Instead, he says, the team wanted to help ensure other people don’t suffer from colorectal cancer.

“We wanted to make it so no one else has to lose a parent to this at such a young age,” he says. “Colon cancer is not something people typically die from as young as my mom did.”

Unfortunately, Joanna was part of a startling trend affecting adults under age 50. Since 1994, cases of young-onset colorectal cancer have increased by 51%, according to the National Cancer Institute. Researchers aren’t sure why.

Jeremy also says having so many young people involved is important, too. They can deliver a message to their parents in a way others can’t.

“It’s something of a shock if your kid, who is my age or even younger, comes up to their parents and says, ‘Mom or dad, I want you to get screened for colorectal cancer,’” Jeremy says. “I think a parent would be taken aback by that a little bit, and it would resonate in their mind and maybe they would take an action and get screened.”

The family is planning to hold another race. No word yet on whether teachers will excuse late homework next year, toobut we think they will.

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.   

Tate MacDowell: Doctors need to diagnose based on symptoms, not statistics

For more than a decade, doctor after doctor told Tate MacDowell, 37, that he had hemorrhoids. Tate is a freelance video editor and works on a computer. Doctors said he sat too much. They told the fit skier and surfer to drink less and get more exercise. Another told him to wait for the symptoms to get worse.

While hemorrhoids could have been a problem at one point, Tate says, he knew something more was wrong.

“After a while, you feel like you’re kind of crazy,” he said. “You’re walking around trying to get all these people to look in your butt.”

Finally, Tate saw a gastrointestinal surgeon who casually suggested a colonoscopy, but noted that it wasn’t urgent. Tate was too young for colorectal cancer, according to all the doctors he saw. With no family history, they said, there was no reason to worry.

After many delays, Tate had a colonoscopy. It revealed a one-inch tumor diagnosed as stage II colon cancer, which shocked everyone. Immediately, Tate entered treatment.

“I did everything that the guidelines recommend for stage II, but as soon as I was finishing up a year of treatments, they started noticing spots on my lung,” he says. “Within months, I was restaged to IV.”

The journey Tate has taken to a stage IV diagnosis is not unique among young-onset colorectal cancer patients. A recent study by the Alliance showed 82% of young-onset cases were initially misdiagnosed.

The Undy

Last year, a nurse treating Tate told him about the Undy RunWalk in San Diego. The Undy is a national 5K run-walk series that aims to get the conversation started about colorectal cancer and raise funds for research, prevention, and patient and family support.

Tate saw the Undy as an opportunity to gather friends and support an important cause. On race day, wearing an ostomy bag and in the middle of chemotherapy, he finished the 5K in a brisk 28 minutes. He even cruised passed his surgeon on the course.

“She was like, ‘What the … ? I can’t even believe you’re doing this!’” Tate remembers.

The truth is, moving makes Tate feel better. He’s always been active—a surfer, a skier, a biker. Many of his films, released through his company, Death Cookie Entertainment, and in partnership with other production companies, focus on action sports and adventure. It’s when he stops moving that the chemotherapy drags him down. He even uses a stationary bike while on the chemo pump.

“As soon as I get a little exercise, it seems to push whatever’s in there through,” Tate says.

This year, Tate ran the race in 22:40 minutes, taking first place among survivors, as his team of more than a dozen friends and family raised $5,875.


When the Undy RunWalk came up this year, Tate took part again. He wanted to raise awareness and money for the Alliance. He also wanted to ensure that those who donated to his cause received something in return.

During chemotherapy treatments, Tate sometimes painted with watercolors to pass the time. He’d gotten pretty good, so he offered a painting to anyone who donated to his race page.

“One thing I don’t like when you make donation is, you give your money and you never hear anything about it being received,” Tate says. “So I wanted to give people an original piece of art to let them know I’m thankful.”

For each donation—more than 50 now—he would tape up the canvas at night, paint in layers throughout the day, and sign each piece. He then biked to the post office with big stacks of work, refilling on stamps. Donors received an abstract scene with layered shades of blue and orange.

“It kind of looks as if you’re looking down from the sky at a mountain range at sunset, or it could look like waves washing up on the beach,” Tate says. “It depends on how you want to interpret it.”

The symptoms and the statistics

“I’m so frustrated with doctors saying that you’re too young,” Tate says. “I was on it. I did everything I was supposed to do. I told them my symptoms, that my stool was narrowing, that there was blood, and they just said you’re too young and it’s not in your family.”

He says he wants doctors to know one thing: “The medical establishment really needs to realize that they need to diagnose based off the symptoms, they can’t go off of the statistics.”

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.

Vanessa Ghigliotty: Five lessons for new advocates

This article was written by Vanessa Ghigliotty, a stage IV colon cancer survivor.


I was always a fighter. Fearless to advocate for the things I loved or believed in, my family called me the lawyer. While earning my bachelor’s degree in mass communications, I took a media law class and I fell in love with it. I knew I had to go to law school, but instead I was diagnosed with stage IV colon cancer right after college graduation.

Fast forward through years of chemo, multiple surgeries, my battle with cancer, and I am the victor. But am I still me? Yes, but now I have even more passion and a tremendous need to fight for other young adults. They should not have to go through what I didthus an advocate was born.

I’ve had the honor of training new advocates on several occasions, and now I get to share some of the lessons I’ve learned with you.  

  • Your story matters! Our politicians are inundated with paid lobbyists on daily basis. But when you advocate and tell your story, you make our issue real. You give life to statistics. When your elected official has to vote on a new policy, it will be your story that shapes their decision. As such, make your story compelling, with succinct language, so it sticks in their head.  

  • Passion. It is your passion that will keep you going when it seems like every possibility has been exhausted. Your passion for this cause will keep going until you find a way or find a person who can help you get the job done.
  • Develop relationships.  This is vital in developing your advocacy efforts. Learning who can open doors for you and help you achieve goals is key. Let’s say you need a PET scan and your insurance company has denied you several times. Along with appealing your insurance company’s decision, it’s helpful to include a supportive letter from your local politician, your oncologist, your surgeon, your therapist, your social worker, and others. It shows that you are doer and will not give up. Insurance companies, politicians, and political staff members notice these things.

  • Get on the list. Politicians always have local offices. Make sure you get on their email list and meet them at their public events. Make yourself known to their staff. Send thank-you cards and make follow-up calls when they supported your cause. Also make contact when they don’t support you, but express your disappointment respectfully.
  • Be prepared and be unafraid to ask questions. To get things moving in your direction, know ahead of time who you are dealing with and what position they take on our issue. Don’t be afraid to ask them questions. It shows them you care, and knowledge truly is power.

When something like cancer touches our lives or our loved ones lives, it becomes personal. There is no force that can move mountains like the passion that stems from something personal. Use this passion in your advocacy efforts and watch things happen!

Justin Hughes: I was incredibly lucky

Two weeks ago, colon cancer survivor Justin Hughes played 18 holes with champion golfer Tom Lehman. It happened during the Cologuard Classic in Tucson, Arizona.

With the help of Nick, a best friend turned caddiewho is an “amazing golfer”Justin says he played really well.

“I don’t know how or why, but the golf gods were watching over me,” he says. “That’s probably the coolest experience I’ve had as a result of colon cancer.”

Cologuard is an at-home screening test for colorectal cancer. The company paired survivors with golf pros for a relaxing day on the green. Justin’s journey to the Omni golf course, however, was anything but tranquil.

Four years ago, at just 34 years old, doctors diagnosed Justin with stage IIIc colon cancer.

“It was an absolute and total shock,” he says.

Fortunately, Justin had been paying attention to his body. He noticed light traces of blood in his stool. Over six months, he started to notice more blood and his bowel habits changed.

“It wasn’t something where you instantly think something is really wrongit was really subtle,” Justin says. “I just thought, there is something off.”

Initially, his doctor thought it was hemorrhoids. Justin agreed.

“Because why would you even say that wordcancer?” he says. “The doctor said, ‘You don’t have to worry about thatyou’re too young.’ And I said, ‘Yeah, duh, I know.”

But as the symptoms grew more apparent, Justin swung for a screening test.

“I went back and said this is still kind of happening,” he says. “Knowing what I know now, I was incredibly lucky because I think it could have gotten worse in a short time.”

Justin’s diagnosis is part of a startling trend affecting adults under age 50. Since 1994, cases of young-onset colorectal cancer have increased by 51%, according to the National Cancer Institute. Researchers aren’t sure why.

Justin underwent a whirlwind of treatment. Chemotherapy and radiation. Surgery to remove the tumor. An ileostomy. Six months more of chemotherapy. And then an ileostomy reversalall in a year.

Since being declared NEDno evidence of diseaseJustin has begun advocating for colorectal cancer awareness.

“I said, ‘When I’m done with all this, and my life is back together, I need to get involved.”

Justin joined the Undy RunWalk Planning Committee in Phoenix. The Undy is a series of run-walks that raise awareness and funds for the Alliance’s mission in 22 cities across the country.

He participates with his family as team “Hughes and the Underoos.”

Justin says colorectal cancer awareness is critical, especially due to the preventable nature of the disease. Ninety percent of cases are curable when caught early.

“We’re really lucky you can go inside a colon, get checked out, and find cancer,” he says. “You’re not that lucky when it comes to prostate, or liver, or anything where it’s hard to get in and take a look. Colon cancer is so easily detectable.”

Justin is the father of two children, who are now 7 and 10 years old. For those with a family history of the disease, doctors recommend screenings at age 40 or 10 years before the age of the youngest case in a person’s immediate family. That means his children will be required to get a screening around the time they start their first jobs.

“They’ll be super pissed at me,” Justin says.

But at least their dad can keep up with golf pros. That’s cool.

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.

Darcy Egan: Facing down FAP and colorectal cancer

Darcy Egan was 25 and about to graduate with a second master’s degree from John Carroll University in Ohio when life suddenly changed.

In preparation for a job as an English teacher, Darcy visited her doctor for a routine physical. Blood tests showed slight anemia, so the doctor urged her to see a gastroenterologistjust to be sure everything was OK.

“A lot of people have stories of doctors who don’t listen to them,” she says. “I have a story about a doctor who advocated for me, and I didn’t even know she needed to.”

The gastroenterologist performed a sigmoidoscopy, thinking it would rule out anything serious. A sigmoidoscopy inspects the last third of the colon, called the sigmoid colon.

“They showed me a picture, and it almost looked like bubble wrap,” Darcy says. The bubbles were polyps, which are growths that appear on the surface of the colon.

The doctor diagnosed Darcy with familial adenomatous polyposis, or FAP, an inherited condition that leads to hundreds or even thousands of polyps in the colon, which will one day become canceroususually by age 39, according to the National Institutes of Health.

A full colonoscopy led the doctor to a tumor and then another diagnosis: Darcy had stage IV colon cancer, despite zero family history of FAP or colorectal cancer.  

The reality of treatment put Darcy’s career on hold. The germ-infested halls of a high school aren’t the best place for someone in treatment, her oncologist said.

“I wanted to be in the classroom and putting these degrees to use,” Darcy, now 26, says. “The idea of not working and seeming unproductive was the biggest blow to me with the whole diagnosis.”

So while she continues treatment, Darcy isn’t sitting still. Quite the opposite, in fact.

She has become active in the colorectal cancer community, leading a team in the Cleveland Undy RunWalk every year, participating on the Alliance’s Never Too Young Advisory Board, and appearing on local news shows to talk about colorectal cancer.

At the Undy RunWalk in 2016 and 2017, Darcy assembled teams numbering more than a hundred people. They were former professors, students, family, and friends.

We had ‘polyps’ of all ages, from babies to grandparents—and even some dogs,” Darcy says. “Being at an event where you physically see 120 people, wearing your shirt, excited, and participating for you, is really cool.”

She also joined the Alliance’s Never Too Young Advisory Board. Through local and national initiatives, the board will raise awareness about young-onset colorectal cancer and remove the stigma of colorectal cancer.

Since 1994, cases of colorectal cancer in young adults, ages 20-49, have increased by 51%, according to the National Cancer Institute. Scientists aren’t sure why.

“A lot of time I see so much pink for breast cancer, and I don’t see a lot for colon cancer, but it’s important to talk about,” Darcy says. “I’ve made good friends who are in the same boat I am, so we kind of commiserate about our experiences, and it seems like if three young women on the West Side of Cleveland have the same diagnosis, that’s way too many.”

And on Fox 8 Cleveland, Darcy will again soon relate a message that’s very important to her, as someone who was diagnosed without any symptoms.

“At my age, a lot of people assume they’re healthy, and they don’t get to the doctor to have that baseline,” she says. “So I’ll talk about being an advocate for yourself, whether you’re healthy or you think something is wrong.”


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.