January Advocacy Alert: 6 Ways to Advocate for Children with Brain Cancer and Their Families

Pediatric brain cancer is the childhood cancer community’s biggest crisis.  

Brain tumors are the most commonly diagnosed and deadliest form of childhood cancer. Current treatments, which are often toxic for kids, are decades behind medical advances in other diseases. And on top of all that, patients routinely experience red tape and bureaucratic delays that can seriously impact health outcomes. 

Childhood cancer is rare, but its impact is immeasurable. Advocacy plays an important role in getting the public to understand the burdens facing our families. Our kids deserve to be seen and heard. Advocates ensure that happens. 

Though legislation is key to unlocking more funding and resources for children with cancer, advocacy is much more than a legislative process. Put simply, being an advocate means using your voice and sharing your unique story to enact change.  

If you’re curious about how you can help accelerate advancements in pediatric brain tumor research and improve families’ access to equitable care, here are six ways to make your voice heard. The best part? None of these options need to be tackled alone; the Pediatric Brain Tumor Foundation is here to work with you throughout the entire process. Email Director of Advocacy Mike Henry at [email protected] if you’re interested in getting started with any of these ideas. 

  1. Meet with your federal legislators. Plan to join us at this year’s Alliance for Childhood Cancer Action Days, April 24-25, 2023 in Washington, D.C. This annual event enables patients, survivors, caregivers, siblings, and other loved ones of children with cancer to speak directly to Congress about the community’s most urgent issues. Registration opens soon. Sign up to receive an alert about Action Days and other opportunities to meet with your legislators throughout the year. 
  2. Share your story with us through our website. Personal testimonials are one of the most powerful means of raising awareness about pediatric brain tumors. They put a name to the crisis and also help others as they face their own journeys. Fill out our Share Your Story form and we’ll work with you to tell your story.  
  3. Join our state cancer plan initiative. Your state’s cancer plan acts as a blueprint for addressing the burden of cancer in your specific area. While all plans focus on adult cancers, few thoughtfully address the unique needs of children and their families. The Pediatric Brain Tumor Foundation is spearheading efforts in states across the country to include state cancer plan language specific to childhood cancer and state budget funding specific to pediatric brain tumors. If you’d like to learn about pediatric brain tumors’ impact in your state and how you can advocate for local families, email [email protected] 
  4. Increase public awareness in your local community. There are many creative ways available for this form of advocacy. Your imagination is the limit! Raising public awareness can take the form of publishing an op-ed or sharing your story through local news and social media, organizing a public awareness event, or petitioning your city or state to recognize an official awareness day or month. Many cities also offer landmark lightings that recognize causes throughout the year. Reach out to your local landmarks and community leaders about lighting up “Gray in May” for Brain Tumor Awareness Month or gold in September for Childhood Cancer Awareness Month. Contacting local news media to cover any of these activities will further raise awareness.  
  5. Testify before the government. You can request to testify in front of your state’s legislature. Do an internet search using terms such as “testify at [name of state] state legislative hearing” for guidance on how to register for a speaking spot. You can also volunteer to speak at a federal congressional hearing. This type of testimony demonstrates strong representation from the pediatric brain tumor community and provides valuable “consumer” input into the legislative process. 
  6. Help us reach others interested in advocacy work. When it comes to advocacy, there’s power in numbers. Share this article or our advocacy interest form (www.curethekids.org/advocate) with your family members, friends, coworkers and social media networks. Let them know why childhood cancer advocacy is urgently needed and how their support can help.  

The Pediatric Brain Tumor Foundation is committed to making kids with brain tumors a national health priority. You can make your voice heard and help us educate policymakers and the public about the childhood cancer community’s biggest crisis by signing up to be an advocate with us! If you’d like to learn more about any of the above ways to be an advocate or want to share your own ideas, email the Pediatric Brain Tumor Foundation’s Director of Advocacy Mike Henry, at [email protected].