Scarlett Talcott, a vibrant 11-year-old from southern Montana, stands confidently in front of the Capitol Building during KidneyCAN’s Advocacy Day. Living on a ranch with her parents, sister, and two brothers, Scarlett balances her love for the arts, crafting, and 4-H activities with a strong passion for advocacy. Scarlett is one of four young advocates we’re featuring in this month’s Community Spotlight, showcasing the impactful voices of young people in the fight against kidney cancer.

Young Advocates Leading the Charge in Kidney Cancer Awareness

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.”

Scarlett Talcott - Advocate for Kidney Cancer Research Funding

Scarlet Talcott, age 11

“It’s important to get involved — you could be the difference! You’ll meet new and interesting people, it’s amazing to be a part of research advocacy. Once you attend a meeting, you’re not afraid anymore. Everyone is welcoming and wants to hear your story.”
Joey Hull - Advocate for Kidney Cancer Research Funding

Joey Hull, age 18

“Civic engagement means using your power to make change in your community. When I was younger, I believed the only way to be properly engaged was to eventually run for office or work on campaigns, but civic engagement comes in all forms. You can start at any age.”

A Young Advocate with Deep Roots in the Community

Scarlett, an 11 1/2-year-old from a ranch in southern Montana, is not the average sixth-grader; she is a passionate advocate for kidney cancer research.

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!”

Scarlett Talcott - Advocate for Kidney Cancer Research Funding

Channeling Resilience into Advocacy

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.”

Joey Hull - Advocate for Kidney Cancer Research Funding
Joey has great advice for anyone — adult or kid — who wants to productively engage with their representatives: preparation is key. “Representatives can be stingy and won’t give money to your cause just because you ask,” he explains.  “You have to be ready to defend your claims and your reasoning for why they should support your asks. It can be intimidating, but you will have nothing to worry about by preparing well and being knowledgeable about your cause!”

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.”

William Kozlowski - Advocate for Kidney Cancer Research Funding

William Kozlowski, age 20

Pictured here with Senator Stabenow (D-MI), William began advocating for kidney cancer research funding in 2016. “Change starts with a single first step. Meeting with Congress is a big task when you look at it from far away, but in reality, it does not have to be. Congressional members are on your side, and when I petitioned Congress, I was shocked how much they actually cared about us and our message.”
Isabel Lewis - Advocate for Kidney Cancer Research Funding

Isabel Lewis, age 17

Isabel has been interning with KidneyCAN during her senior year, assisting with advocacy efforts for our fiscal year 2024 asks. “I have seen KidneyCAN succeed repeatedly with Congress, increasing federal funding from $0 to $50 million in four years. As intimidating or difficult as it may seem, it is very much possible to advocate and make an impact when an issue is important to you.”

Telling His Story to Champion a Cause

William Kozlowski, a 20-year-old finance student at Michigan State University, embodies a profound commitment to advocacy born from personal experience. Growing up in Royal Oak, Michigan, William enjoys the camaraderie of friends and family, a support system that has been crucial in his journey.

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.”

William Kozlowski - Advocate for Kidney Cancer Research Funding
Starting his advocacy journey at just 16, William has a powerful message for his peers about engaging with Congress. “Congress is the place where solutions to your issues become a reality… being involved with advocating Congress is the best way for you to see positive results!” he advises. His experience underscores the potential impact of youth voices in the legislative arena.

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.

Following in Her Father’s Footsteps

Isabel Lewis is 17 years old. She lives right outside of Philadelphia and has been interning with KidneyCAN during her senior year of high school.

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 Lewis - Advocate for Kidney Cancer Research Funding

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.

Uniting for a Common Cause: The Impact of Youth Advocacy

Scarlett Talcott, Joey Hull, William Kozlowski, and Isabel Lewis each provide an inspiring and poignant illustration of the profound impact that young advocates can have in the realm of kidney cancer advocacy. They represent the potential and power of young individuals in shaping the future of healthcare policy and research funding. Their stories and advocacy efforts demonstrate that age is no barrier to making a significant impact.

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.

 The KidneyCAN team thanks Scarlett, Joey, William, and Isabel for their work on behalf of the kidney cancer community. Their dedication, insight, and perseverance highlight the significant role that youth can play in shaping healthcare policy and research funding. They are a vivid testament to the power of youthful energy and vision in our collective journey towards finding effective treatments and ultimately eradicating kidney cancer.

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