1 With a bright purple stuffed animal in tow, Emily Whitehead and her parents, Tom and Kari, of Philipsburg, Pa., walked the hallways of the U.S. Capitol on Thursday, urging legislators to support the research that saved Emily's life.
2 The Whiteheads traveled to Washington, D.C., as part of the annual Family Advocacy Day sponsored by the National Association of Children's Hospitals.
3 Many of the more than 220 member hospitals from around the country brought patients and their families to 'connect the work we're doing in the hospitals and the funding the government gives,' said Peter Grollman, vice president of government affairs, community relations and advocacy for Children's Hospital of Philadelphia.
4 Grollman said that while pediatric research only accounts for less than 10 percent of National Institutes of Health funding, which is facing cuts as a result of the sequester, the hospital depends 'heavily' on the money, and Emily's treatment is a prime example.
5 'If those opportunities don't exist to find therapies that save lives, we really find ourselves at a disadvantage … all of us, frankly, not just kids, but adults, too,' Grollman said.
6 Emily recently celebrated one year of being cancer-free after a recurring battle with acute lymphoblastic leukemia, or ALL, the most common form of pediatric cancer.
7 After traditional treatment options failed, Emily became the first child to have her own T cells - infection-fighting white blood cells in her immune system - genetically engineered by researchers at CHOP and the University of Pennsylvania to recognize and attack the cancer cells in her body.
8 Doctors removed her T cells through a process similar to blood donation, programmed them to attack her cancer, then grew them and injected them back into her body.
9 On the family's agenda for the day was visiting members of Pennsylvania's delegation: Republican Reps. Glenn Thompson and Joe Pitts, Republican Sen. Pat Toomey and Democratic Sen. Bob Casey.
10 The Whiteheads, Dr. Susan Rheingold, one of Emily's doctors from CHOP, and another family advocated for restored NIH and graduate medical education funding in between games of tag with staffers.
11 Grollman said that unlike other hospitals around the country, children's hospitals didn't receive funding for residency training until the early 1990s when the Children's Hospitals Graduate Medical Education program was created.
12 'Folks that treat kids like Emily, this is where they get their start, this is where they practice medicine,' Grollman said.
13 'There's nothing more challenging for a parent to have a child that needs to get an appointment but there's a shortage of specialists, and it's a problem around the country, not just at our hospital'.
14 He said that President Barack Obama's budget proposal this year accounts for only a third of the past funding.
15 According to the National Association of Children's Hospitals' website, while only accounting for 1 percent of hospitals in the country, freestanding children's hospitals train 45 percent of pediatricians, 50 percent pediatric specialists and the majority of pediatric researchers.
16 'The bottom line is that when you cut two-thirds of that funding, you're essentially gutting the program,' Grollman said.
17 Casey and Pitts are co-sponsoring the Children's Hospital GME Support Reauthorization Act of 2013, which aims to restore funding for the program, Grollman said.
18 'This is a bill that really just authorizes spending on the program,' Grollman said.
19 'Ultimately, though, it's going to be up to the appropriations committee to fund the program'.
20 Thompson said that restoring NIH funding is 'very high on my priority list'.
21 He said that there are two sides to the issue: the innovation developed through medical research and a qualified workforce.
22 'The big crisis in health care really is having available and qualified trained health care professionals out there,' he said, adding that the Whiteheads' 'just have provided hope to a lot of families around the world'.
23 Thompson said he received two autographed 'children's champions' cards from Emily that included her picture and information about her treatment and personality.
24 One is on his desk, and he took the other to the House floor to share with Rep. Jack Kingston, R-Ga., the chairman of the Labor, Health and Human Services, Education and Related Agencies subcommittee, which oversees health funding.
25 Tom Whitehead said that all the legislators were supportive of what the family had to say.
26 He said that being from Pennsylvania, many of the legislators have been following Emily's progress, and that Casey shared his own experiences.
27 'He was really impressed with Emily's story, and he talked to us about the transplants his dad went through,' Tom Whitehead said.
28 'He's a really big advocate of the funding and really how Emily's treatment had brought more jobs to Pennsylvania with the Novartis partnership and people traveling to get treatment'.
29 Novartis, a pharmaceutical company, joined with the University of Pennsylvania in August to build on the research and development of the ground-breaking T-cell therapy.
30 'We had a good day,' Tom Whitehead said, adding that the family offered to return to Washington if the congressmen need an example of the impact of NIH funding.

The Whiteheads traveled to Washington , D . C . , as part of the annual Family Advocacy Day sponsored by the National Association of Children ' s Hospitals .
National Association of Children ' s Hospitals
how long has that been an organization?