A BIG thank you

I am so proud of our patients and their families! Together, we blanketed Capitol Hill and held meetings in the offices of 14 different Representatives and Senators from New England. The staff and Members of Congress in each office we visited saw firsthand what a difference access to pediatric specialists and subspecialists can make in the lives of their constituents. There is no better way to advocate for the Children’s Hospital Graduate Medical Education program!

Each year, I leave Family Advocacy Day feeling re-energized about my work and this year is no exception. The patients and families who traveled to Washington for this event took time out of their busy lives to speak up for some of the most vulnerable Americans. The elected officials and staff who we met are in the midst of solving some of the most pressing economic challenges ever to face our country. Yet, we all came together for a day to talk about our nation’s children and what we can do to keep them healthy.

Some highlights of my day include:

Dr. Rosen, the Herod family and I arrived for our meeting with Representative Frank Guinta (NH) just after he had been called away to a vote. We expected that we would sit down with his staff and they would relay our meeting to him later on. Instead, his staff walked us right into the Capitol and down to the House floor so that Rep. Guinta could step away and see us in between votes. For nearly ten minutes, with the chaos of the official business of our government happening all around us, the Herods had his full attention. Kylie’s mom and dad described the challenges they faced in finding the right diagnosis for their baby and explained how the many specialists at Children’s have been able to work together with them to help her thrive. Rep. Guinta asked how he could help and committed his staff to working together with the hospital on issues that impact New Hampshire children’s access to care.

While waiting for Senator Susan Collins (ME) to arrive for our meeting in her office, Lily (age 2) announced that she needed to use the potty right away! Sometimes, you just can’t wait. Her mom whisked her away. Of course, Senator Collins walked in just after Lily and her mom had left. Lily’s big brother Colby (age 5) immediately stepped up to the plate for his sister. What an advocate! He handed Senator Collins the trading card with Lily’s photo and story and helped his dad describe what Children’s Hospital Boston means to their family. And Lily made it back in time for a photo with the Senator!

There are many ways to measure the success of this Family Advocacy Day. In the coming days, we will count how many new cosponsors are added to the CHGME reauthorization legislation and analyze the follow up that we have with the many offices we visited. What we can’t measure, and the reason why we do this year after year, is the personal impact of hearing the true stories of our amazing patients and families on the individuals responsible for setting health care policies in America. Just as the families will remember this experience for a long time, the legislators and staff will remember their visit. For that, on behalf of Children’s Hospital Boston and the many children we serve, we thank you!

~ Amy DeLong

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