An update from Natalie Steuer, Elevate Advocate and Mom to Sage, Rhabdomyosarcoma Survivor from her time in DC advocating for federal changes that affect those diagnosed with childhood cancer.

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   Hey there! Thanks for stopping by when you could’ve been caught up in the endless scroll or tackling that never-ending pile of laundry. I get it; there’s always something else to do. 

   If you are here because you are affected by childhood cancer, I am sorry. If you are here because you want change, that’s rad and I think you’re really cool. We are going to take a lively journey together – buckle up and join me on an adventure in childhood cancer advocacy at the federal level with the Alliance for Childhood Cancer.

 What’s the scoop, you ask? Well, I’ve just returned from Washington DC where I attended Action Days Training day, a crash course featuring insights from top-notch experts at NIH/NCI, rockstar pediatric oncologists like Dr. Michael Link [More on Dr. Link HERE], and, of course, some so-so lunch from a conference hotel (you know the drill ;)). This day is your ticket to becoming a Capitol Hill superhero. Why Capitol Hill? Ah, you’re asking the good questions!

   Hill Day swoops in after Training day. You, my friend, become the ambassador for your home state, with the Alliance setting you up for meetings with your representatives. But what’s on the agenda, you wonder? Hang tight—we’re getting there!

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Enter “The Asks“:

• Federal Funding for Childhood Cancer Programs: We’re talking about the Childhood Cancer STAR Act [Link HERE] and the Childhood Cancer Data Initiative [LinkHERE], striving to enhance childhood cancer care and research. Asking Congress for $30 million to fully fund the STAR Act and $50 million for the Data Initiative is on the to-do list. [The STAR Act has been fully approved legislation through the year 2028, but allocating the funds to pay for these must be approved EVERY year.]

• The Accelerating Kids’ Access to Care Act [Link HERE]: Kids with cancer often need specialized care, and we’re pushing for smoother access to that care, even if it means crossing state lines.

• The Pediatric Cancer Drug Supply Act [Link HERE] – For House Members Only: Drug shortages impact our little warriors, and we aim to fix that.

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   Now, I get it; it’s serious business. It hits close to home for me, too. I was here with Elevate because my son battled Rhabdomyosarcoma in 2022. The STAR Act funded a less toxic protocol, and the CCDI, launched in 2020, is storing over 9k pieces of Rhabdomyosarcoma information in its ecosystem, along with other childhood cancer data. The funds from these initiatives make a real difference in kids’ lives.

[Link HERE to learn more about Rhabdomyosarcoma and Elevate Rhabdo’s mission!]

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Okay, you’re in the loop. Now, let’s delve into the ABCs of Advocacy. It might seem intimidating, but trust me, it’s worth it.

Three tips from someone who’s been there:

• Ask Questions: Lots of them! Advocating is networking, and if you don’t network, how will you ever be relevant in a space you are trying to fill?

• Be a Sponge: A good advocate is a knowledgeable one. As an advocate, you support a cause or policy. You need to be factual. If you spread misinformation about something like childhood cancer your reputation could be jeopardized. 

• Confidence: Walk with Confidence and purpose, and always introduce yourself with your first and last name.

     And there you have it – Action Days conquered! Thanks for hanging with me, diving into advocacy, and discovering the thrill of making your voice heard!

xo- Natalie Steuer

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Did you miss Elevate’s preview to Action Days? Read it HERE and learn more about this legislation and why it’s so critical for our children diagnosed with childhood cancer!

Ready to get involved and make a difference?