Community Member Spotlight

SPOTLIGHT

on CCA Awareness Month Champions


A Tribute Through Illumination

For Nikki Ferraro, this work is personal, as she lost her brother to CCA when he was just 32 years old. She played a vital role in the “Light It Green” initiative, reaching out to landmarks across the country and inviting them to illuminate in green for World Cholangiocarcinoma Day.

“Every ‘Light it Green’  approval felt like a tribute to my brother and a chance to make a difference,” Nikki shares. “Preparing for Awareness Month felt like a blend of purpose and healing,” she explains, finding meaning in each campaign milestone. Nikki submitted over 150 lighting requests across the United States and enjoyed participating in a collective movement.

“It’s nice to see the impact of everyone’s efforts as we shine a light on cholangiocarcinoma. It’s a  ripple effect —getting people curious, asking questions, and learning about a cancer that so often goes unnoticed.”

Amy Payne’s platform, “Turning It Up Green,” leverages her role as a national pageant titleholder to spread awareness on local, national, and international levels.

“Awareness Month is a wonderful opportunity to educate my state, nation, and the world about such a rare cancer,” Amy explains. “The why is simple: My mother, Joan Hatfield Payne. I promised her and myself that her life, and the 79 days we scrambled even to figure out what CCA was, would never go unnoticed.”

Amy submitted 79 proclamation requests to state and mayoral offices, advocating for HR4424 (Vietnam Veteran Live Fluke Cancer Study) by writing to and visiting Kentucky’s state House and Senate offices, and encouraging fellow state-level titleholders to contact their legislatures to support the resolution. She also sent CCA Awareness Packages to Miss Elite Petite title holders across the country and encourage them to share messages on social media, spreading more awareness.

For Becky Stapleton, February holds a special significance. “My Dad’s birthday is February 8, so bringing awareness while celebrating his life is special to me. By socializing the symptoms and bringing awareness, we increase the opportunity for earlier diagnosis, funding, and research.” Becky’s dedication to securing state and local proclamations began four years ago.

“I didn’t know what I was doing the first year, but I received eight state and local proclamations. I felt my Dad’s story was being seen and heard.”

Becky now guides others in requesting proclamations and finds joy in seeing the map of the U.S. filled with participation. “Some states have more than five people reaching out to say they’ve made the request!”

Are you passionate about the difference an empathetic and supportive person can make in a patient or caregiver’s journey? Become a mentor and offer encouragement and compassion to patients and caregivers as they walk through difficult periods of diagnosis, treatment, and, if needed, palliative care. Mentors are cholangiocarcinoma survivors, patients, caregivers, family members, or friends of cholangiocarcinoma patients.

Learn more about our CholangioConnect Program

Would you like to help fuel our mission by raising funds for research, advocacy, and patient support while also increasing awareness? You can help raise critical funds in many ways–from hosting an online birthday fundraiser, to planning a workplace raffle, or coordinating a fundraising event with your friends and family or in your community–these opportunities are flexible and are inspired by YOU to fit your interests and time constraints. CCF has tools and resources to help guide your success.

Do you enjoy participating in athletic events? Partner your love for fitness with your desire to make an impact by joining TeamCCF today! When you participate in an organized race, marathon, or other athletic event as a TeamCCF member, you create change by raising funds and awareness.

Would you like to help link patients to scientific research to promote education and create change? As a Research Advocate, you will have the opportunity to provide a patient perspective on research activities to scientific advisory boards and committees. Research Advocates stay current on available research and clinical trials, complete ongoing required training, and attend meetings.

Do you enjoy engaging with others through social media? If you are active on at least one social media platform, you can help us expand our reach. As a Social Media Influencer, you will work to recognize and support people hosting social media fundraisers, spread awareness of the Foundation’s mission, and research and develop social media campaigns.

Are you a detail-oriented person who enjoys providing support for important projects? Administrative Assistants provide vital contributions to CCF initiatives by completing various administrative tasks. We will pair your knowledge and skills with the right project.


If you have any questions regarding the volunteer program, please contact Claire Condrey, Volunteer Manager, at claire.condrey@cholangiocarcinoma.org


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