Lauren reflects on her trip to DC

My experience in Washington was absolutely amazing. The privilege of being chosen to attend these meetings and tell my story on Capitol Hill was wonderful. I had three meetings; one with Elizabeth Warren, Joe Kennedy, and Mo Cowan. Each one seemed to really listen and care about the issue that we are facing regarding Medicaid. I was not expecting the senators to be so intent and interested in what we had to say. I was prepared to meet with people who were just going to “yup” us and rushed into their next meeting. My favorite meeting was with Joe Kennedy because he seemed to understand what we were dealing with and the issue behind the problem better than the others did.  It was not as much walking as I was told it was going to be but I think it was worth every step.

My favorite part of the trip was either the party the night before Capitol Hill or the briefing meeting because I found it very interesting. The people I met were so wonderful and caring. The hardest part about the trip was having to watch out for Anthonie (a boy who also has CF). Although everyone there has complicated medical conditions, you would never be able to tell by looking around the room. I often found myself wondering who the ones with a condition were and who were friends and family. The people I met and heard stories from were just moving and empowering. The things that they have to deal with are far more than what I have and I was questioning why I was chosen because I do not consider CF complex because I am so used to dealing with it that it has become normal for me. Trading cards with all the kids, going home, and reading their stories on the card made me gain respect for them and gratitude for family and myself.

The hotel we stayed at was very fancy and was wonderful about accommodating all of our needs regarding our medical conditions. I was very pleased with all of the services they provided, including the prepared meals and functions. After my trip to Washington, I had a new sense of thankfulness and was very proud of what I had done. I would not change a single thing about the trip except maybe to make it longer.

The trip was unforgettable and a once in a lifetime opportunity for me. I loved everything about it and would do it again in a heartbeat!

 

~Lauren Gregoire (Massachusetts)

Congratulations and thanks from the Boston Children’s Team

Josh Greenberg from Boston Children's office of Government Relations, shakes hands with Mass. Senator Mo Cowan.

Josh Greenberg from Boston Children’s office of Government Relations, shakes hands with Mass. Senator Mo Cowan.

Riley, Thomas, Lauren and their families made Boston Children’s Hospital very proud last week.  As a group, we held nine meetings in congressional offices on Thursday.  Josh Greenberg, Maria Fernandes, Sandi Fenwick and I had the pleasure of accompanying these families to their meetings and I know I speak for all of us in saying how very proud we are of these three patients and how grateful we are to their families for taking the time to travel with us on this journey.

In each meeting, our patient was the star and the families did a much better job making policy issues come to life for their elected officials than any lobbyist or administrator could do:

While we spoke about a federal commitment to the Children’s Hospital Graduate Medical Education (CHGME) program and the importance of training pediatric specialists, Thomas’s family described the concerns they had about the retirement of the surgeon who had essentially rebuilt their child’s insides.  They also described their great relief that his care was picked up by former residents who had trained under that very same surgeon, underscoring the importance of training a new generation of pediatric specialists.

While we spoke about improving care for medically complex children on Medicaid, Riley and her family pulled out their care map to show the complex network of specialists and providers that it takes to keep Riley healthy.  They shared the important role that Medicaid plays in assisting with the co-pays that can quickly accumulate when your child needs to see multiple specialists during every visit to the hospital.

While we spoke about the importance of advancing pediatric research, Lauren described the clinical trial in which she is a participant.  The hospital and the National Institutes of Health share a commitment to developing new treatments and cures for conditions like cystic fibrosis, but we depend on the active participation and trust of patients like Lauren who are willing to help drive medical research forward.

Thanks to the offices of Representative Joe Kennedy, Senators Elizabeth Warren and Mo Cowan (Massachusetts); Representative Carol Shea-Porter, Senator Jeanne Shaheen and Kelly Ayotte (New Hampshire); and Representative Chellie Pingree and Senators Susan Collins and Angus King (Maine) for their warm welcomes.

 

~Amy DeLong

Boston Children’s Hospital

Family Advocacy Day Recap

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Bent over his legal note pad, he scribbles quickly and glances up several times to catch Lauren’s eye as she tells him about a clinical trial she’s recently joined. A member of his staff sits beside him, just as focused on the 16-year old Wrentham native’s story and I’m again amazed by how at odds this experience is with what many Americans have come to expect from their Congress.

You might be more familiar with Washington DC as a place where posturing and brinksmanship take priority over finding effective solutions for constituents, but Lauren’s experience—and those of two other Boston Children’s patients, Riley and Thomas—paints a totally different picture. That’s because, this past week, the country’s capitol played host to Family Advocacy Day (FAD), an event organized by the Children’s Hospital Association (CHA).

The event is an opportunity to help put faces and names on the healthcare statistics. It’s also an event that the hospital has taken part in for the past five years, sending patients who have received complex care and their families to meet their Senators and Congresspersons. Lauren Gregoire and her mother Roberta represented Massachusetts this year, while 10-year-old Riley Cerabona and her family met with officials from Maine, and the Vincent family, including 17-year-old Thomas Vincent, spoke on behalf of New Hampshire residents.

For some, FAD is their first glimpse of Washington DC and CHA organizers work hard to make sure it’s a memorable experience, devoting the first half of the first day to a sightseeing tour of the Lincoln Memorial and the National Air and Space Museum. Later that evening, the hotel’s ballroom is transformed into a huge indoor carnival complete with ice cream stations, face painting and caricaturists, all welcome distractions from the families’ upcoming meetings.

The next day, Lauren, who suffers from Cystic Fibrosis, isn’t shy at all in her conversation with Congressman Joe Kennedy, who avidly takes notes. At this point in the day, Lauren and her mother have already met with Senators Mo Cowan and Elizabeth Warren, but if either of them is feeling the strain, they do a very good job hiding it.

The level of attention they’ve received from all three officials doesn’t quite jive with the image of jaded politicians we hear about from news anchors and pundits, but maybe that’s precisely the power of having families speak for themselves. Lauren, Riley and Thomas have conditions that require the kinds of complex care and expertise that only Boston Children’s and a handful of other hospitals are able to provide. Yet, not one of them is defined by those conditions and the personalities I—and the officials we met in DC—got a chance to see spoke volumes about what is possible when hospitals, public health agencies, and the individuals they serve work together.


~Kipaya Kapiga

Boston Children’s Hospital

 

Click here for more information about Lauren, Riley, and Thomas.

Click here for a photostream.

 

Riley looks back on her day on Capitol Hill

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When I heard we would be talking to Chellie Pingree, Susan Collins and Angus King, I was sort of nervous. I mean almost no one gets to do that.

Then when we got there, I was less nervous and more excited. On Wednesday, we went to the Lincoln Memorial; it was pretty cool to see Lincoln and where Martin Luther King Jr. gave his “I have a dream” speech.

In the Air and Space Museum, I learned a lot. After we had a briefing and role play; since I love performing, it was so cool. The next day, we saw Susan Collins. I was nervous that I would mess up, but we did awesome.

Soon, we went to see Chellie Pingree, but had to wait for a while before she came in. That and the lunch we had afterwards were a lot of fun. Our last visit was with Senator Angus King—we talked with his staff for a while and I was really tired. We took a photo with Angus King. Overall, it was a great experience.

Now we’re headed off to the Capitol for a tour with Senator King’s staff!

~Riley Cerabona

The Obsidian Odyssey, part II.

FAD201352It’s odd. The trip bas been a combination of friendly and relaxed—carnival games and sightseeing—and formal—visiting Capitol Hill and meeting actual state Senators and Congressmen.

We just met with Senator Shaheen’s staff member, Allison. She seemed very interested in what we had to say. She was very knowledgeable about the healthcare system of New Hampshire and was engaged in our conversation. I was happy with how the meeting went.

It felt good to talk with the Senators and Representatives. I think we did a good job of connecting the issues to actual stories. Our goal of keeping them up to date on our situations was a success.

~Thomas

Mid-day update from Amy DeLong, Govt. Relations

FAD201347Our day’s gotten off to a fabulous start! We had a nice breakfast at the hotel and took off for Capitol Hill. I travelled by metro with Lauren, Thomas and their families—and we were joined by our soon-to-be CEO Sandi Fenwick. At the Hill, our group split up with the three families separating to visit officials from their home states of Maine, Massachusetts, and New Hampshire.

The first order of business after getting to the Senate offices (Russell and Dirksen) was meeting New Hampshire Senator Ayotte in her office for a coffee hour she holds with her constituents. The Thomas’ family had a chance to tell their story and did a great job of explaining the importance of access to care at Boston Children’s Hospital for New Hampshire residents.

From there, our families and staff have held meetings in the offices of Senator Collins, Representative Pingree—both from Maine—as well as Representative Shea Porter of New Hampshire and Massachusetts Senators Cowan and Warren.

Please check back for more updates and photos. For now, we are off for the afternoon meeting line-up.

~Amy DeLong

The Obsidian Odyssey, part I.

FAD201326So far, I’ve really enjoyed talking to other people about where they’re from, what their pasts are, and what they enjoy doing. The patients and families I’ve met all have very interesting stories to share.

This morning, we met with Senator Ayotte; she was very friendly and open to what we had to share and overall, I think the meeting went well. Unfortunately, we were not able to meet personally with Congresswoman Shea Porter because the House of Representatives was in session discussing and voting on the Farm Bill. Instead, we met with members of her staff.

Just like our meeting with Ayotte, the atmosphere was very inviting. They told us stories about how they were connected to Boston Children’s Hospital and I was very happy to hear that they were also in support of helping the programs at the hospital.

We were also able to go to the House of Representatives gallery and watch them debate and vote on different amendments and bills. We actually saw Congresswomen Shea Porter and Kuster on the floor during the vote.


~Thomas