In the heart of advocacy efforts led by KidneyCAN, young advocates like Scarlett, Joey, William, and Isabel are making their voices heard.
“It can be overwhelming to meet with Congress in D.C., but everyone is welcoming and wants to hear your story,” says Scarlett Talcott, echoing the sentiments of many young advocates who are driving change in kidney cancer research funding.
William Kozlowski adds, “During my Congressional meetings in Washington D.C., I was surprised by how receptive the Congressional members are to your personal experiences. Your story and message does matter to them.”
Her involvement in advocacy was sparked by a family history deeply affected by cancer. “Three of my grandparents have had cancer, and one has kidney cancer. My family also has people who are at higher risk of developing kidney cancer. My uncle was in the military, and we are Inupiaq Indigenous Alaskans. I wanted to raise awareness and funding for cancer research,” Scarlett says, reflecting her family’s legacy of advocacy.
Her experience in D.C. was eye-opening. She learned how Congress makes funding choices and how citizens can influence those decisions by speaking up. “It’s not as hard to talk to the representatives as I thought. The KidneyCAN group gives you the tools you need to successfully visit your representatives. Even though the representatives are older, they listen and are interested in what I had to say.”
Scarlett’s advice to her peers is clear and inspiring: “It’s important to get involved; you could be the difference!”
Joey Hull is an 18-year-old who grew up in central Ohio with his parents, Jason and Ann Hull, and his two sisters. Now studying microbiology and immunology at McGill University, Joey enjoys the outdoors and has hobbies that include running and biking.
For Joey, advocacy became a personal mission after his mother’s kidney cancer diagnosis in 2019. The diagnosis launched his parents into advocacy and inspired Joey to join. “Seeing my mother fight not only the cancer within her but also for funding from the government showed her resilience,” Joey shares. “I wanted to be like her; she always has been and will be my hero. Advocating for research funding felt like a great place to start.”
Joey says he first learned about civic responsibility in his U.S. history class: “I learned the importance of being engaged citizens who speak up about issues that impact our community. I saw examples throughout history of how to use your voice, and I learned about joining groups with similar interests, like KidneyCAN, to amplify your voice.”
He emphasizes the many forms civic engagement can take. “From helping with local elections to running for office, civic duty does not have to be a grand spectacle,” he says. Joey encourages peers to start small, perhaps by writing letters to representatives. “Putting your thoughts on paper and sharing them can open the door to sharing your ideas on a bigger platform and getting them in on your representatives’ agenda. Letter writing helps you build the advocacy skills you can then take into meetings.”
He also points out that kids have natural experience with advocacy. “Talking to your legislators is like talking to your parents about why you should get those new shoes for Christmas. You have to speak with passion, maintain eye contact, and show that you’ve done your research. Remember, you may be young, but that doesn’t mean your points aren’t valid.”
Joey also believes it’s important to work for the world you want to live in. “When you take steps to create change, you ignite the flames in others around you. You benefit personally by developing skills that will help you in your future career, but you are also making a positive impact globally.”
His path to advocacy began in a deeply personal manner. “I was first prompted to be engaged as an advocate for kidney cancer after my aunt was diagnosed with stage IV kidney cancer in 2016,” William recalls. “I became very passionate and eager to be involved in the kidney cancer community. I wanted to use my skills and resources to help all the patients and survivors of kidney cancer in any way possible.”
William’s experiences in Washington D.C., where he joined Congressional meetings to discuss funding issues, highlighted the power of personal stories in civic engagement. “It’s important to be transparent in order to form a personal connection. Then the representatives will better understand the message that you are there to promote.”
Speaking to the intimidation many feel about meeting with Congress, William offers reassurance and encouragement. “Congressional members are on your side,” he asserts, emphasizing that the first step towards change is often the most crucial.
On harder days, William finds motivation in his role as a student and an advocate. “To be a part of something that is larger than myself is quite inspirational to me,” he shares. This sense of being part of a greater good fuels his dedication to advocating for kidney cancer research and support, making him a pivotal part of KidneyCAN’s advocacy team.
For Isabel, the mission is personal. Her father is KidneyCAN President Bryan Lewis, who was diagnosed with kidney cancer when Isabel and her twin brother were just one year old. As she grew up, Isabel learned more about the funding landscape for kidney cancer research and KidneyCAN’s mission. “The end goal for KidneyCAN is to eradicate kidney cancer so it no longer devastates families. I realized as I’ve grown older that this requires me to step in and help, so someday I won’t have to worry about my loved ones dying of this disease.”
Isabel points out that kidney cancer research funding has not always been a priority for our legislators. “Our country faces many challenges, and it can be hard to get kidney cancer research funding put at the top of the list,” she says. “However, the health of future generations of Americans depends on our advocacy. We have to put in the time and keep going back to Congress.”
Isabel highlights the necessity of persistence and preparation in advocacy, especially in a challenging environment like Congress. “It requires preparation,” she emphasizes. “You don’t get a lot of time with the staffers, so you need to give a really good pitch but also relate to them.”
“The U.S. Capitol Building is giant and filled with many people. Though it may seem intimidating, it’s not so bad. There are many offices staffed by younger people who listen and take notes and try to understand your concerns,” she says.
KidneyCAN’s Spring Advocacy Days are a testament to this belief, where voices of all ages come together to advocate for a crucial cause. As we look forward to our Spring Advocacy Days, we invite more young voices to join this vital movement. Together, we can amplify our call for increased funding and research, paving the way towards a future free from kidney cancer.
We are deeply invested in kidneycan.org. Our youngest sibling & dearest sister has been diagnosed with kidney cancer twice in her life. Two separate types. Watching her determined battle as a child and now as a grandmother has been awe inspiring to her dedicated family friends & all who know her. Debbie does so with dignity & strength always considering the needs of others. She is dedicated to her faith family & kidneycan.org
Debbie inspires us too! We are so grateful for her dedication and advocacy.