Tuesday, May 17, 2016

Day 17: Step Up to Childhood Cancer

Today, advocates from across the country are in Washington D.C. for Childhood Cancer Action Days. They are meeting with senators and representatives to have their voices heard. But it’s not just their voice, many of them are speaking for their children. See, these are parents who are watching or have watched their child take on a cancer diagnosis.

This isn’t just a time for these people to come together and tell their stories, they are actually impacting legislation. They are asking the elected officials who represent them to vote for the STAR (survivorship, treatment, access, research) Act. Many of you have seen me use the hashtag ‪#‎morethan4‬. Childhood cancer only receives 4% of the National Cancer Institute’s research funding, which is why very few improvements have been made in childhood cancer treatments and survival rates. The STAR Act will help to increase funding for childhood cancer by putting a pediatric oncologist on the National Cancer Advisory Board. Seems like the kids at least deserve a seat at the table, right?

I’m so proud that we have friends there to be our voice and tell Tillery’s story. A flyer about Tillery is among the children’s stories that will be told during today’s discussions. Our friends from The Ronald McDonald House, Katie Anne and Billy are there along with a few friends from our Lighthouse Family Retreat, Lauren and Cindy. Katie Anne and Billy are Bennett’s parents, who many of you prayed for as we shared their story. Bennett had a terminal brain tumor and passed away in October. Lauren’s son, Ollie, was given a “terminal” diagnosis but is currently NED (no evidence of disease)!!! Cindy’s son has ALL and AML leukemia (because one type is not enough) and is also in remission.

Here’s how YOU can help Tillery and all these kids…

This is a link to the page about the ‪#‎stepup‬ movement. Specifically, this link takes you to a map where you can find the names and contact information for YOUR representatives. http://stepupforchildhoodcancer.com/sponsor-map/

Join us in calling them, emailing them, or sending social media messages to them. Let them know that these kids deserve better. They deserve a future.

If you want to share Tillery’s story, please do so. If you have your own story to tell, do that.
Thanks for joining the movement. Thanks for stepping up.

(Tillery is still learning how to step up so she really could use your help!)

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