We were honored to represent our community in Washington, D.C. for Childhood Cancer Action Days! This vital event brings together advocates from across the country to speak directly with lawmakers about the urgent need for increased funding, research, and support for children battling cancer.

Action Days give childhood cancer patients, survivors, caregivers, family members, and advocates the opportunity to meet with their home state legislators in person, advocate for key policy issues currently before Congress, and ensure the voices of children with cancer are heard loud and clear. This year, we brought a few incredible NNCCF warriors to share their powerful cancer journeys and make an even greater impact. Their voices and experiences are crucial in helping lawmakers understand the real challenges families face.

Landen who was diagnosed with Ewings Sarcoma at the age of 15, says, “I had such an amazing time at the Capitol. It was a very enlightening experience to see how advocacy can make an impact on our representatives. While we are pushing the funding for children’s cancer research and preserving their right to quick and affordable care, the bar can always be set higher. The job is never finished for those who bleed gold.”

Executive Director, Brigette, who attended action days alongside these incredible families, says, “Hearing these families share their stories and everything they have endured due to a childhood cancer diagnosis was truly profound. We must do better for our children!”

You can make a difference by advocating for increased funding for childhood cancer research by signing the American Childhood Cancer Organization’s petition: https://www.tfaforms.com/5160998

Read about Era’s Perspective of the trip:
 

Era, a sweet and soft-spoken girl diagnosed with leukemia at age five, joined NNCCF in the nation’s Capitol for Action Days with her mom, Cheri. When asked to reflect on her journey, Era shared from the heart what the experience meant to her.

“She said the plane ride made her a little nervous when taking off and landing, but she is glad she pushed past her fear. She didn’t like the turbulence, because it made her feel scared when she would get that feeling of going up and then dropping. She really enjoyed being able to look out the window though, because she never thought she would be above the clouds. She fully enjoyed having a window seat and she continued to open and close the window throughout each flight. She enjoyed seeing how high up she was. At the airport, Era loved walking on the moving walkway. She thought it was cool to go faster than other people when walking on it.

Meeting with our Representatives made Era feel a little nervous since she didn’t know who she was going to be speaking in front of, but she knew it was important for her to use her voice to help others understand the significance of her story just like many others.

It also gave her confidence in knowing she was with other young people that had cancer stories. Also, being with NNCCF and the Tyler Robinson Foundation helped because she felt comfortable with the group and she thought everyone in the group was so nice. She appreciated the idea of all the other cancer survivors that would be advocating that day on Capitol Hill, because she knew they were all cancer warriors just like her.

Afterwards, she felt proud of herself because she knew what being a survivor meant to her so advocating for other children going through it was important to her to help any way that she could.

On Training Day Era had a lot of fun getting to hang out with kids her own age. When they first met they all discussed their diagnoses. She thought it was special that she got to hang out with a group of girls that were close to her age and that had similar interests.

One thing Era really loved about the trip was all the food. She couldn’t believe all the food that kept getting served at the St. Baldrick’s dinner, the night before training day. She felt like they just kept serving and serving her. Felamina’s was Era’s favorite restaurant because she loved seeing the “Nonna” in the window before entering into the restaurant. She ordered salmon that was topped with fish eggs and that was Era’s first experience trying them, but she absolutely loved the dish.

Going to the zoo made the trip feel complete. She loved seeing the pandas, because she thought it was silly to watch the Panda laying on its back while snacking on a bamboo stick and then when it got to the end of the stick it would throw it out to get a new piece. She felt like the animals were all so neat. The museums that she was able to visit were all so neat and special to Era. Being a girly girl, one of her biggest highlights was seeing the Hope Diamond at the National Museum of Natural History.

Era overall felt the trip was such a special experience. Era let me know if she were ever asked to advocate again on Capitol Hill she would say yes. If she could do anything different the next time around she thinks she would speak a lot more.”