2018 Family Advocacy Day Recap

This week, nearly 50 child patients and their families made over 150 visits with members of Congress during our 14th annual Speak Now for Kids Family Advocacy Day. Some of the families most impacted by children’s health care policy shared their personal stories with lawmakers and media to emphasize the importance of investing in children’s health care.

Family Advocacy Day started on Tuesday, June 26, with our patient champions and their hospital representatives arriving in Washington D.C. to advocate for children’s health. After registration, families were off for the Washington Sightseeing Tour and took amazing photos to share on social media using the hashtags #SpeakNowforKids and #GoBig.

During that first morning, one of our patient champions — Leeya from LeBonheur Children’s Hospital — did a Facebook live interview with Dr. Jennifer Arnold to learn about her background in pediatric care and why she wants to advocate for children’s health.

At the family briefing later that day, McKenzi Coan, three-time Paralympic Gold Medalist, gave an inspiring speech. “You can do anything you set your mind to, regardless of your situation,” she said. As it turns out, little Charlie from Children’s Minesota is on his way to be a gold medalist just like McKenzie. Participants also learned how to effectively talk to members of Congress about Medicaid, the Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act) and the Children’s Hospitals Graduate Medical Education (CHGME) program.

The first night ended with a patriotic dinner celebration for families and hospital staff with live music, face painters, caricaturists and other family-friendly entertainment. Our little advocates had so much fun singing and dancing to Frozen and Moana songs — they met and took pictures with their favorite superheroes too!  But of course, our child patients are the bravest and strongest superheroes in our book. 

Participants were up bright and early the following morning to head over to Capitol Hill. Families talked to lawmakers about supporting policies that improve the well-being of all children. We were so impressed by our child patients and their amazing advocacy skills!

Marina met with Sen. Marco Rubio, R-Fla., to talk about her challenges with giant omphalocele and the important role that Johns Hopkins All Children’s Hospital has played in her life. And of course, her excitement would not let her leave without taking a selfie with Sen. Rubio!

Nearby, Alex shared his personal story of living with mitochondrial disease with Sen. Ron Wyden, D-Ore. Because of his serious medical complexity, Medicaid has been vital to ensuring Alex has access to the care he needs and that Cook Children’s has the resources it needs to treat Alex. Improved care through Medicaid will help Alex stay focused on the things he loves, like acting and playing the violin.

We can’t say how much we appreciate every hospital and patient family that participated in the 2018 Speak Now for Kids Family Advocacy Day this week. Each and every one of them used their voice and their story to make children’s health a priority — truly, they spoke on behalf of all kids across the country.

Didn’t attend Family Advocacy Day? Here’s how you can join the effort:

  • If you haven’t already, sign up as a Champion for Children’s Health
  • Join other parents by tweeting your elected officials and asking them to #GoBig for children’s health
  • If your child gets care at a children’s hospital, send the hospital a Facebook message asking about ways to get involved in their year-round advocacy efforts and perhaps even how to participate in a future Speak Now for Kids Family Advocacy Day!

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commented 2018-06-29 10:27:07 -0400 · Flag
We had an amazing time and what an experience! Marina was absolutely thrilled to help make a difference! Thank you Speak Now for Kids and Johns Hopkins All Children’s Hospital forr giving us this incredible opportunity!