Dr. Palfrey testifies

On June 12, 2009, Judith Palfrey, MD, president-elect of the American Academy of Pediatrics, testified before the Health, Education, Labor and Pensions (HELP) Committee. Click here to watch video of her testimony.

Our meetings

sebastien6/19/2009

What a trip we just returned from! We met a lot of great people and we had A LOT of fun! Thursday consisted of 3 meetings for us. Our 1st meeting was with Chellie Pingree, who wasn’t able to stay to hear what we had to say about how important it is for all children to have health insurance. We were able to get a couple pictures with her and then she had to leave to go take a vote. We were able to express our story to 1 of her staff members who was great! The next meeting was with Senator Susan Collins. She sat for about 20 minutes and was very attentive to what we had to say. She is a great woman. We got some pictures with her and then she was off. The 3rd meeting was with Senator Olympia Snowe, who unfortunately was in a meeting so we were unable to meet her in person. We met with one of her staff members to tell her our experience at Children’s Hospital Boston. All of the staff members that we met with will meet with their “boss” and hopefully relay our information to her. I am hoping that they will take everything into consideration and get a bill passed that mandates all children have health insurance. We would like to express our deepest graditude to NACHRI and to Children’s Hospital Boston for giving us this amazing opportunity. It was so much fun!

Erin

Thank you

6/19/2009

White HouseToday we are home and winding down from the last few days!  We arrived home around midnight so the kids are dragging a little – taking extra-long naps right now to get caught up on some sleep, I suspect!

What a blessing it was for our family to get to participate in Family Advocacy Day, alongside other wonderful families who are passionate and committed to taking action in the best interest off ALL children.  We met SO MANY wonderful and inspiring kids and parents!  I think Jakob and Caroline will remember the things they saw and did in DC this week for the rest of their lives, at least I hope that they will!

I always say this about the doctors and nurses we have had experience with at Children’s Hospital Boston, and now I’ll expand it to include the people we met through our Family Advocacy Day experience from government services……You are all such an amazing group of people!  Our lives have been enriched and enhanced because of knowing you!  Thank you for all you did this week!

Laura

Day 2: Telling our stories

I am so impressed with all six of our families! All together, Children’s Hospital Boston met with a total of 15 congressional offices today. When you count the three substantive meetings Josh and I had yesterday, this is a total of 18 meetings – out of the total of 27 offices in our region, this is a fantastic rate. I had the pleasure of joining families for five of those meetings and loved hearing the families tell their stories and watching the legislators and their staff respond to them.

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2009 families and staff

Group photoSafe travels home!

Pretzels with Senator Reed

I think the highlight of my day Thursday was our meeting with Senator Jack Reed from Rhode Island. I think this is the third or fourth time I have accompanied a family from Rhode Island (this time Bekah’s wonderful family). Every single time Senator Reed takes the time to sit down and really LISTEN to what the families have to say. This morning, he immediately went off to fetch pretzels when Bekah said she was hungry. I suspect this may be because Senator Reed has a 2 ½ year old daughter himself and knows how to keep kids happy.

On a more substantive level, Senator Reed worked very hard last year to make sure that the Children’s Health Insurance Program was reauthorized. He sits on the key HELP Committee which is co-writing the Senate bill, and had a lot to say about the quickly unfolding political dynamics. He clearly believes there is a strong and vocal set of Senators who will continue to speak up for children, and seems clearly to count himself among them.

I was also impressed with the attention that each office paid to the individual situations of our families and whether they could help smoothe some of the difficulties they have accessing care on occasion. It is worth remembering the impact that one’s own elected officials and especially their staffs can have in resolving complex issues, and how those experiences will sometimes inform the kinds of issues the office works on in Congress.

Josh

Special subway ride

Jakob_Caroline6/18/2009
5:00 pm

N.A.C.H put on an amazing party/dinner for all of the kids last night. Jakob and Caroline got some new toys, novelty pictures taken, and their caricatures  done by some very talented artists!

 

 

Jakob's caricature

Jakob's caricature

Caroline's caricature

Caroline's caricature

Today we headed over to “The Hill” to do some business. Jakob and Caroline of course charmed all of the staff members along the way! We had 3 great meetings – 2 in the offices of our senators (Shaheen and Gregg) and one in the office of our representative (Paul Hodes). A staff member in Rep. Hodes’ office was even nice enough to take us on a special subway that the Senators ride beneath Capitol Hill! Jakob loved that! We even spied a couple of more senators along the way – very exciting!

We finished the day with a group photo on the steps of the Capitol – along with a diaper change for Caroline there, too!

Now, we are getting ready to fly home tonight!

Laura