Proud of our FAD families

Our FAD12 group

I am so proud of each one of our families!

Together, we participated in 15 meetings on Capitol Hill during Family Advocacy Day.  We spoke with many staff members and had personal meetings with Senator Scott Brown (MA), Representative Bill Keating (MA), Senator Jeanne Shaheen (NH), Senator Kelly Ayotte (NH), Representative Charlie Bass (NH), Senator Bernie Sanders (VT) and Senator Patrick Leahy (VT).  Our patients and their families had the full attention of everyone they met and they did a fabulous job telling their personal stories and drawing connections from their own experiences to issues of public policy.  As Leanna, Kyler and Nicholas have all relied on numerous pediatric specialists and sub-specialists for their health care, they put some personal faces on the need to support institutions that train these types of health care providers.  There is nothing like a real life example from one’s own district to advance the education of a Member of Congress or a staffer.

Some of the highlights of my time on Capitol Hill with families this year included:

  • Leanna’s composure in every meeting.  Especially in her meeting with Scott Brown, there were a lot of cameras and distractions, but she kept her focus and articulated her story beautifully
  • During the Ayotte meeting, Nicholas decided his mom’s description of his health history had gone on long enough and interrupted her with this summary:  “I’ve got issues.”
  • A ride on the Senate subway!  What a great way to beat the heat.  We were lucky that several offices offered us staff escorts to travel from one side of the Capitol to the other using this staff-only system.
  • Kyler, when asked to tell Senator Leahy about himself, talking about his school, his hobbies and his favorite food, which is shepherd’s pie.
  • Nicholas’s sister, Kyra, quietly saying to Jeanne Shaheen after the meeting “I don’t know how the health care system works, but I do know that without Boston Children’s Hospital, my brother wouldn’t be here.”

All of our families have returned to New England and have been welcomed home by cooler weather.  I hope all of our families and Dr. Berry leave DC knowing that they have made a difference.  My job as a lobbyist on Capitol Hill is try to educate those making decisions about our health care system.  But I know that it is our families are the real experts and I am so thrilled to have had the opportunity to bring these experts to policy makers.  I know that they will remember our families and their stories when it is time to make tough decisions.

~ Amy DeLong (Manager of Federal Government Relations at Boston Children’s)

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