2018 Blue Hope Bash AmBASHadors
2018 Blue Hope Bash AmBASHadors
On October 25, 2018, the Colorectal Cancer Alliance hosts 12 incredible allies from across the country at our annual Blue Hope Bash. Our AmBASHadors, comprised of patients, survivors, and caregivers, represent a nation of allies impacted by colorectal cancer. Our AmBASHadors have generously shared their stories to inspire all of us to continue giving of ourselves generously. The Blue Hope Bash is the Alliance’s largest fundraising event, raising almost $7 million since its inception in 2010. Funds raised at the Blue Hope Bash support the Alliance’s goals to double the number of people served, save 100,000 lives in the next 10 years, and invest $10 million in critical research by 2021. Together, we can end this disease in our lifetime.
Those who know her would say Marietta is sweeter than the 400 dozen cookies she sells every year at Cookies4Chris, a Pittsburgh event in memory of her sister in law, Chris Sapienza. Marietta wants you to know that colorectal cancer strikes all ages and that screening saves lives, which is why she supports the Alliance.
Marietta Barrett organizes Cookies4Chris, a memorial fundraiser for Chris Sapienza, the mother of Alliance CEO Michael Sapienza. Marietta met Chris in college at Duquesne University in 1968 and became friends. Chris was diagnosed with colon cancer in 2006, fought for three years, and passed away from the disease in 2009. Though Chris spent most of her adult life in the Washington, DC, area, all the people who loved Chris in Pittsburgh felt a need to honor her memory there, too. Together they created Cookies4Chris, a cozy luncheon and vendor show where fresh-baked cookies—a favorite pastime of Chris’—take center stage.
In Marietta’s words:
“I would like people to know that colorectal cancer is treatable and curable if detected early. Everyone has to be their own advocate and be persistent when things are not right, even if the subject matter seems embarrassing to discuss.
I want people to know about my best friend and sister-in-law, Chris Sapienza. Chris grew up in Pittsburgh, and her family and friends wanted to honor her memory by raising awareness of this disease. The result is an annual fundraiser that includes a very Pittsburgh tradition—the cookie table. It was and is our way of drawing people in to learn about how colorectal cancer strikes all ages and that screening saves lives!
The Alliance has introduced me to a new family of survivors, caregivers, and doctors. Each has a unique story to tell but share a common passion to find a cure, help others, and advocate. This nation of allies is determined to make a difference and it serves as my inspiration and motivation.”
Lori had symptoms during pregnancy and became very sick in the months after the birth of her son, Eli. She went to the doctor expecting to find a bad case of hemorrhoids. It was stage IV colorectal cancer. Lori says to never ignore your symptoms.
Every day is a blessing, says Lori Charney, who was diagnosed with stage IV (metastatic) colorectal cancer 10 years ago. Symptoms started during pregnancy with her son, Eli. Like many new mothers later diagnosed with colorectal cancer, she dismissed the constipation as another side effect of carrying a child. After all, she was only 32 years old, a former athlete, and had no family history of the disease. Once Eli was six months old, the family went on a cruise, looking forward to relaxation and the ocean air. But Lori was lodged most of the time in her cabin bathroom, as her health sunk and blood appeared in her stool. Once docked and back home, Lori had a colonoscopy, expecting a terrible case of hemorrhoids. Instead, the doctor called after just two days and said they found a tumor in her rectum. Later, they found a cancerous spot on her lung, as well. After a three years of treatment, including a couple surgeries, Lori is now NED (no evidence of disease). Today, she spends time with her two “really cool kids,” grateful for the opportunity to see them grow up.
In Lori’s words:
“Don’t ignore your symptoms. Ever. Rectal bleeding is never normal, and, despite your age (I was 32 at diagnosis) and no family history, cancer doesn’t discriminate. Despite your resources or lack thereof, there is always a way to find help. That’s where the Colorectal Cancer Alliance comes in.
I want to be an AmBASHador to inform others about my stage IV story and help prevent others from having to go through it by providing insight and hope.
The Alliance has helped me personally by knowing that I have a community of resources right by my side to help me get through any cancer related question—both during treatment and life post cancer.”
Rich, a dedicated ally and supporter, lost his wife Elika to this disease in 2008. Rich keeps Elika’s generous spirit alive by giving back his time and talents to our community. He’s a father of four, including a two-week old baby girl.
Rich Confalone has been a dedicated ally and supporter of the Colorectal Cancer Alliance since the passing of his wife, Elika Hemphill, in 2008 at age 41. As director of global events at Discovery, Elika held a personal and professional belief in the power of community. She felt that no one should ever feel alone, Rich told the Washington Post shortly after her passing. If she spotted a homeless person while walking through the city, she would pull the largest bill out of her purse and hand it over. As the consummate host, her last event, a memorial service at Discovery, gathered more than 500 friends and family. Elika was an incredible writer, too, and her experiences with colon cancer found an audience online. That’s how Rich learned of the Alliance. Through CEO Michael Sapienza, he saw the ways that Elika’s story could help make a difference for others.
In Rich’s words:
“I want everyone to know that colorectal cancer is not a disease for only the old, it occurs in younger people, too, and at a growing rate. The medical community needs to change its protocol, start screening at an earlier age, and have a dialogue with patients as common as discussing high cholesterol.
My hope for the Bash is that it educates and heightens awareness to the extent that it saves lives, raises the vitally necessary funds needed to combat this disease, and helps those who are in battle with the disease now.
The Alliance has allowed me the opportunity to take my pain and anger towards this disease and use it in a positive way: to help others, to educate, and to keep the memory of my beloved wife Elika alive.”
Joy was in the best shape of her life when she was diagnosed stage IIIc. She says it doesn’t matter your politics, religion, race, or social status—colorectal cancer affects everyone. Joy is also a dog behaviorist, and so determined to save both human lives and those of our best friends.
This year Joy Freedman held a birthday fundraiser on Facebook with two goals: get everyone turning 50 screened for colorectal cancer and end this disease. For her in-person party, she collected nearly $1,800 in gift cards from friends and family and donated them to the Alliance, for our patient navigators to send to families in need. She knows the financial strain of colorectal cancer, having been diagnosed with stage IIIc colon cancer at age 46. Treating the disease wiped out her savings, and now she’s determined to help other allies any way she can. Joy was misdiagnosed twice, before doctors found a tumor the size of an orange during a colonoscopy. At that time, Joy was in the best shape of her life, showing the indiscriminate nature of the disease. She recognizes the power of sharing her story and being there for newly diagnosed patients, who are often weighed down with questions. Joy is a member of the Alliance’s Never Too Young advisory board, an active user of our Blue Hope Nation Facebook community, and participates in the Philadelphia Undy RunWalk every and last year DC ScopeItOut 5K. Joy is also a dog behaviorist and owner of 4Paws Pet services for over 24 years, as well as an advocate, working across states in the mid-Atlantic region to educate and promote the humane treatment of animals.
In Joy’s words:
“Colorectal cancer is unique in that it can spread quietly to multiple nodes and organs. Once it’s in the lymph nodes, it may stay dormant or pop up at any time in your life. It can spread very fast. It’s something a colorectal cancer survivor is always aware of, and it defines you in two ways: your life before cancer, and your life after.
I don’t care if you’re a caregiver, survivor, in treatment, or dealing with recurrence—all 12 AmBASHadors have traveled the same path and we’re spreading the same message—this disease is beatable if caught early. It’s the only cancer you can pre-screen for at a recommended age. I hope people understand that it doesn’t matter your politics, religion, race, or social status—colorectal cancer affects anyone and everyone. It is a silent disease. It affects one, and it ripples out. It touches one person, it touches generations of people.
The Colorectal Cancer Alliance is the family that I never wanted but I could never live without. And that’s true. The Alliance is family. I don’t look at it any other way. They are the only people, the only family you have, that don’t judge you, that support you and lift you up. It’s where you can go to be safe, to be heard, and it’s where you can go to make sure this disease happens to no one else.
Laura is an events intern at the Alliance. If you received a car raffle ticket, Laura mailed it to you. If you bid on a silent auction item, Laura helped make that possible. But what makes her an AmBASHador is her dad, Philip, who passed away when she was just three years old, forever changing her life. She says his spirit is still felt, and we’re certain he is with us at the Bash.
Laura Gerson, a Colorectal Cancer Alliance intern, lost her father to colorectal cancer when she was three years old. Though Laura was too young to remember Philip’s diagnosis, two years of treatment, and passing, her mom told her about those times—and shared many other stories that were happier, too. Today, Laura has an orange butterfly tattooed on her arm in memory of her father. She says his physical absence from her life changed everything about growing up. She didn’t have a father, which was something her young friends—and even some today—couldn’t quite understand. He was also the main source of financial support for the family, which includes her older brother, making things tight around the house. Laura learned to grow up quick. She says that Philip’s love and spirit is still felt. She says his story, and the way it impacted her life, makes her more compassionate and kind toward others. She seeks to understand the struggles people face, even if they don’t wear them on the outside. Interning at the Alliance, Laura says, has been one of the best experiences of her life. Whereas people who haven’t struggled with this disease are compelled to say “I’m sorry” when they hear her story, our nation of allies can often say “I understand.” Laura is studying public health at American University.
In Laura’s words:
“If you catch colorectal cancer early, you can beat it, and screening is the most important thing. Even though my dad had gotten screened 10 years before his diagnosis, since gastrointestinal diseases run in my family, had he been screened earlier, he could’ve beat it.
I really wanted to be an AmBASHador because I felt like my story would be different from others people would be hearing that evening. As a young person, as someone who lost their loved one, and also because he was so young. If any of these things can help raise awareness and screening, then I’ll feel like I have done something.
The Alliance has been amazing. You guys have welcomed me like I was a part of your family. I’ve never felt so included and surrounded by people who truly understand what it was like going through what my family went through. It’s so hard to find a community where everyone can relate, and being able to relate is essential.”
Thom Long worked 27 years at Verizon, but his most important job was caregiver to his late wife, Anne, who had an infectious spirit of giving. Today, Thom keeps her legacy alive by being a great dad, a great granddad, and making a difference in this world.
Thom Long worked for 27 years at Verizon, but his most important job was as caregiver to his wife, Anne. The mother of two adopted boys had her first colonoscopy at age 51, and the family was shocked to learn that she had stage IV (metastatic) colorectal cancer, which eventually spread to her lungs and brain. She had no symptoms indicating disease. Immediately, Thom leaped into the caregiver role. He kept an Excel spreadsheet to track treatment options. As information poured in, he helped Anne digest it all. It was a natural role for him. Early in their dating, Anne said if they were going to be together, they had to commit to helping people. It only made him love her more. She had an infectious spirit of giving, Thom says. Though Anne passed after four years of treatment at Maryland Oncology, Thom keeps her legacy alive by bring a great dad, a great granddad and making a difference in this world for others. Today, he uses all he learned during Anne’s courageous battle to help others. “I want to do what I can to spread the word and help folks become educated on their treatment options,” Thom says. “She still inspires me every single day.”
Peg knows that words are powerful. So she tells her story of young-onset colorectal cancer often, and as part of the Alliance’s Never Too Young advisory board. She wants doctors to know there is no such thing as being “too young” for this disease.
Peg Myrick, 38, had a scare when she was diagnosed with colorectal cancer on the spookiest of days—Halloween, two years ago. She had scheduled a colonoscopy because of incessant and increasing pain in her gut. The doctor assured her that she was too young for cancer--an incorrect belief held by too many physicians. The doctor later told her that not only did she have a tumor obstructing her bowels, but the cancer had spread to her liver and lymph nodes, too. Peg had to turn in the pencils and leave her job as a middle school principal to undergo treatment at Johns Hopkins in Baltimore. After a few surgeries and several rounds of chemotherapy, Peg’s tumor are now stable. Her next scan is in November. Peg believes words are very powerful, and she has started a blog to share her story and save others. “Hearing how my story has impacted others gives me fuel,” she says. Peg is a member of the Alliance’s Never Too Young advisory board, a frequent contributor on our Blue Hope Nation Facebook community, and an attendee at our National Conference.
In Peg’s words:
“What I have been through shows that it’s worth it when I see I have helped someone. Especially women, in which we don’t put our health first as we are so busy helping others or just consumed with the daily life demands.
I want to be an AmBASHador because I want to share my story in hopes of helping others. I never want another person to be told by a doctor they are “too young” for colorectal cancer. I encourage everyone to be their own advocate—ask questions, get second or third opinions, and trust your gut. Your life depends on it!
The Alliance is inclusive, welcoming, genuine, helpful and all encompassing. I like how focused they are on the mission and their strong patient support program. They are extremely accessible and help however they can.”
Nicole is living proof that this disease affects young people, too, and she wishes to inspire hope that colorectal cancer can be conquered—even at stage IV. She celebrated her victory over this disease by raising $10,000 and donating it to the Alliance.
In 2005, Nicole Obenski’s gastroenterologist recommended a colonoscopy, which showed ulcerative colitis. From the moment of her diagnosis, Nicole was a prisoner to her condition. Her young adult years were filled with anxiety and dominated by an incessant need to go to the bathroom. Years later, still suffering from colitis, Nicole married and wanted to start a family. Unfortunately, she went through back-to-back miscarriages. A doctor recommended a colonoscopy, from which she woke up with her mother and husband by her side. The doctor found a mass in her colon. Nicole underwent eight months of aggressive chemotherapy. In October 2017, she had a subtotal colectomy. For Nicole, the ostomy came into her life like a blessing. “People that have experienced colon cancer with no family history or inflammatory bowel disease may view having an ostomy as a burden,” Nicole said. “For me, it is a win-win, as I no longer have colitis and I also beat cancer. It changed my life in the best way possible.”
In Nicole’s words:
“I want people to know that this disease is preventable. Colorectal cancer is occurring at an increasing rate especially among young adults. This particular demographic needs to realize that this disease does not only affect those 50 and older. It is so important to listen to your body, get screenings, and know your family history. Do not let anything go.
I want to participate in the Bash as an AmBASHador to show that I am living proof that this disease can affect the young while providing hope that colorectal cancer can be conquered even at stage IV. Everyone attending this incredible event has a common purpose and that is coming together to raise awareness and live in a world free of colorectal cancer.
The Alliance made me realize I was not alone when I found Blue Hope Nation. I wanted to give back after I beat this disease so I hosted a fundraiser to celebrate my victory. I raised $10,000 and donated it to the Alliance. Since then I became part of a passionate group of Allies where I feel empowered and determined to support those fighting, those who made it, and those who will be diagnosed with this terrible disease.”
Wolfgang sports a blue ribbon tattoo, and he’ll tell you all about it, but he’ll also ask if you’ve been screened for colorectal cancer. A survivor, he wants people to know that an ostomy isn’t the end of the world—a message he shares in our Blue Hope Nation Facebook community and as a buddy in our mentor program.
When Wolfgang Roeder was diagnosed with colorectal cancer at age 64, he didn’t have many people to talk to about it. “You don’t walk around and ask friends, ‘Have you ever had experience with colon cancer?’” Wolfgang says. Eventually he found the Colorectal Cancer Alliance’s Facebook community, Blue Hope Nation. Here Wolfgang could connect with like-minded allies. Later, he joined the buddy program, which pairs allies with similar journeys. “I wish I had found it earlier,” Wolfgang says. “It’s not like talking with a doctor. You can make it as personal as you want—you can talk to someone like a consultant, or like a friend.” Wolfgang’s treatment for stage III colorectal cancer included surgery and the removal of his rectum. Many patients recover from this surgery and live normal lives, Wolfgang’s doctor advised, but unfortunately Wolgang’s path took a detour for the worst. For a year, he had little control over his facilities, until doctor’s installed a permanent ileostomy in April 2016. Today, Wolfgang is “90 percent” NED (no evidence of disease) and supports others by sharing his experiences. As a buddy and user of Blue Hope Nation, he advises on topics ranging from ostomy bag adhesives to surgical options. He also sports a blue ribbon tattoo. People will ask about its meaning, Wolfgang says, and he tells them he's happy to answer, but he'll also ask whether they've been screened for colorectal cancer.
In Wolgang’s words:
“What I want people to know about colorectal cancer is, get screened or suffer through a big pain in the rear.
I’m looking forward to being an AmBASHador to show that an ostomy is not the end of the world but a big help to live a normal life.”
You can often find Valarie on social media and in the news. In the three years since diagnosis, Valarie has dedicated herself to advancing survivorship and advocating for screening. Having lost her brother to colorectal cancer in 2010, she pleads the importance of knowing your family history.
Valarie Schlosser’s cancer story begins in a hospital emergency room, where she was admitted with severe stomach pains. A CT scan showed a tumor in the 49-year-old’s colon the size of a lemon. It was stage IV (metastatic) colon cancer—a disease that quietly ran in her family. Her brother died of colon cancer in 2010, something no one in her family knew until a few weeks before his death. In the three years since her diagnosis, Valarie has dedicated herself to advancing survivorship and advocating for screening. She says survivorship begins from the moment someone is diagnosed and can continue for a lifetime. Screening is essential to thwart the advancement of the disease and holds heightened importance for people who have relatives with the disease. People who have a first-degree relative with colorectal cancer face between two and three times the risk of developing the disease than people without a family history. Valarie has already started talking to her 24-year-old daughter about the disease and the necessity of screening. As a fierce ally determined to end this disease, Valarie has traveled the country sharing her story. “I just hope that I can reach one person who can hear this and say, ‘Oh, wow, this could be me,’” Valarie recently told USA Today.
In Valarie’s words:
“My lack of knowledge about the symptoms of colorectal cancer, and not knowing about being high-risk because of my brother, who passed in 2010 from colon cancer, is something I don't want anyone else to go through. I want people to know that colorectal cancer is preventable, treatable, and beatable if detected early. The importance of knowing your family history is key, and you are never to young to be diagnosed with colorectal cancer.
I'm honored to have been chosen as an AmBASHador for this year's Blue Hope Bash. It's the largest fundraiser and to be there to share my gratitude of the Alliance with many of the largest donors gives me such joy. I want to let the donors know, if not for the many donations survivors like myself, would not have been able to attend the informative conferences and connect with other survivors as I have. I truly am forever grateful for the Colorectal Cancer Alliance and would love to share this with the guest, just how much their donations count and help so many
The Alliance has helped me in many ways. The information, resources, patient networking and financial help has helped me in so many ways, I would have been lost if not for CCA. With financial scholarships, the Alliance has helped me to pay certain bills and to attend conferences. The Alliance has provided a platform for me to speak and share my story. It's provided a place for me to ask questions and feel less alone. It's given me a chance to meet other survivors and help others, by giving back and sharing my experiences and information while providing encouragement.”
Joann had no symptoms prior to a routine colonoscopy, which found stage II cancer. Joann is proof positive that screening saves lives. She thanks her mother-in-law for pushing her to get that fateful procedure. Joann has a lot of living left to do.
Joann Simms credits her mother-in-law for pushing her to get the colonoscopy that may have saved her life. Joann had just turned 50—a recommended screening age for normal-risk individuals—and was looking forward to enjoying “the backside of life.” But it was that routine colonoscopy that led to a colorectal cancer diagnosis in May 2015. Prior to the procedure, Joann had symptoms that were not closely considered by physicians. Testing showed she had low iron deficiency and anemia, as well as digestion issues that were said to be caused by lactose intolerance. After the colonoscopy, she went straight to surgery to treat stage II colorectal cancer. Joann says the diagnosis set her back in life. She fell into a “cancer fog” and would have panic attacks in the middle of the night. It was in dealing with her questions and fears that she learned of the Alliance and its resources. She even attended the Blue Hope Bash in the fall of 2015, shortly after her diagnosis. Fortunately, Joann’s treatments have been successful, and her latest scan came back “all OK.”
In Joann’s words
“I want people to know that colorectal cancer is increasing in young people, so doctors need to be more aware of the little symptoms. Also, people need to get screened. Colorectal cancer can be prevented.
It is my hope that by attending the Blue Hope Bash that people will be able to put a fairly young African American female face on this disease. That colorectal cancer happens to people like me, people who are productive citizens and still have a lot of living to do.
The Alliance’s online platform has been a great place for me to connect with other survivors and to share information. I have met and gotten to know some truly amazing people. I have benefited from the sharing of information as well as the sharing of comfort with other survivors. It’s nice to have people you can reach to for well wishes when it’s scan time or reach out with a general question about poop (lol).”
Diagnosed at 41, Anisa fiercely battled colorectal cancer and came out on top. With the Alliance, she found a supportive and understanding community that helped her heal the psychological wounds faced by many of our allies.
Anisa Tootla never expected a colorectal cancer diagnosis, but at 41 years old, that’s what her doctor gave her. While the diagnosis could have turned her world upside down, a supportive family and work environment let her move ahead with life. Her mom moved down from Michigan and helped around the house while she pursued treatments including radiation, chemotherapy, and surgery. She continued to work full-time as a vice president at AARP. While she rushed head-first into treatment and battling the disease, it wasn’t until later, at the start of her healing process in 2012, that she felt the psychological wounds of cancer. Anisa became a board member at Chris4Life, a precursor of the Colorectal Cancer Alliance, and surrounded herself with a community of people who could understand. “Meeting (Colorectal Cancer Alliance CEO) Michael, being on board of Chris4Life, being introduced to online communities, and going to events—all of that was such an important part of my personal healing, but it was also important to do to bring resources to bear to end this cancer,” Anisa says. Today, she looks forward to further involvement with the Alliance and ending this disease in our lifetime.
In Anisa’s words:
“I tell people all the time now, this is happening to more and more young people. When you’re 41, and you go to radiation and you’re the youngest person there, it’s more of a motivator to be a face and voice and advocate. I’ve never been so publicly open about this. Not to mention, it takes a lot of funding to address this pervasive cancer.”