Stories about: Family Advocacy Day

Family Advocacy Day: Three families take their stories to Congress

Nova, who has Pfieffer syndrome, walks through a park.
Nova is taking her story to Congress

Later this June, three patients from Boston Children’s Hospital will be joining other kids and young adults from across the country at the 2018 Speak Now for Kids Family Advocacy Day in Washington, D.C. During their visit, they will share their stories with Congress and ask them to protect all children’s access to health care.

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Boston Children’s raises its voice for kids everywhere

A team from Boston Children’s Hospital recently returned from Family Advocacy Day, a national event sponsored by the Children’s Hospital Association that gives children’s hospital patients from around the country and their families a chance to meet with leaders on Capitol Hill and share their stories about the importance of pediatric hospitals. Here, Joshua Greenberg, Boston Children’s s vice president of Government Relations, shares why Family Advocacy Day is so important and explains how this year’s meeting was helped by three special kids.

Joshua Greenberg and Amy DeLong of Boston Children's Government Relations team make a promise for all pediatric patients.

Taking three families from three different New England states to Washington D.C. to speak with their elected officials about health policies is a lot of work. There is a ton of travel logistics to be sorted out and some pretty complicated schedules to accommodate. Once there, D.C. takes a little getting used to. The city moves at a fast pace and has its own special language that can be confusing to the uninitiated. Factor in the heat and humidity of a southern city in mid-July and you can be left with a cranky Government Relations staffer (me!) and a tired group of children and families. It’s far from a vacation, but Boston Children’s Government Relations team would never miss a Family Advocacy Day event. All the work it takes to organize is instantly justified when we see in person the reach our advocacy efforts can have in Washington. Every year our team returns to work refreshed, engaged and energized. I think the families that participate feel the same way.

Children are often left out of the “formal” political process. They don’t vote, and younger children can only rely on adults to speak up for their needs. For that reason it’s the mission of Boston Children’s (and children’s hospitals in general) to advocate for their health needs. Boston Children’s Government Relations team devotes a great deal of time and effort to a broad range of issues, from preserving insurance coverage to improving mental health access and reducing childhood obesity rates. I like to think we are good at what we do, but without question the best child advocates are children and their parents.

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Children's Hospital Boston visits Washington D.C.

Children’s Hospital Boston employees and families got home from Washington D.C. last night, having just finished participating in Family Advocacy Day. Family Advocacy Day is an annual, national event sponsored by the National Association of Children’s Hospitals that enables children’s hospital patients and their families to make their voices heard to leaders on Capitol Hill.  This year Children’s Family Advocacy Day team consisted of Children’s president and COO Sandra Fenwick, Dennis Rosen, MD, Joshua Greenberg, vice president of Government Relations, Amy DeLong, Manger of Government Relations and Children’s families from Massachusetts, Maine and New Hampshire. While in D.C. they meet with senators, state representatives and even a few “military officials” left over from the Reagan administration.

Stars Wars characters were on hand for FAD 2011 because child actor Max Page (who played a young Darth Vader in a recent Super Bowl commercial and also is a patient at Children's Hospital Los Angeles) delivered a speech.

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Children's staff and families take to DC for Family Advocacy Day

CHBinDThe health needs of children and adolescents are unique from those of adults. But despite their significant differences, when it comes to applicable laws and regulations, pediatric health care policies are often lumped in with adult heath care legislation, which can have detrimental repercussions. But starting tomorrow, legislators won’t be able to ignore these pressing pediatric issues, as kids with pediatric health conditions and their families descend on Washington, DC, to discuss how pediatric public policy impacts their everyday lives. Family Advocacy Day, which kicks off tomorrow, is an annual, national event sponsored by the National Association of Children’s Hospitals (NACH), where patients get the chance to communicate directly with leaders on Capitol Hill about important pediatric care issues.

Children’s Hospital Boston staff are accompanying two families to meet with legislators, and Children’s Family Advocacy Day representatives will be keeping a communal blog to share their thoughts and experiences during the trip. Check out childrensindc.wordpress.com and read about Zebediah and John, two boys who will meet with lawmakers and share their stories about pediatric illness, treatment and what it’s like to be a kid with serious medical issues.

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