Around Children's
The Big Apple Circus Clown Care Unit® celebrated its fifth anniversary at Children's Hospital Boston this past year. These key members of the care team help spread smiles among the faces of children throughout the hospital. You might find them doing their rounds on the patient floors or camped out in front of the mini-pond in the main lobby singing "Tiny Bubbles."
Whether it's Nurse B.B. or
Drs. Gonzo, Mal Adjusted, Laffles, Baloney, Gon' Golfin' or Mensch cracking the jokes or tapping their oversized toes, there is sure to be children's laughter close by.
Children's clowns have some 83 counterparts at 14 hospitals across the country. They may don red, bulbous noses, and carry noisemakers and bags of tricks, but these dispensers of smiles and laughter are indeed professionals who undergo six weeks of training, work closely with experienced mentors and are highly valued here at Children's Hospital Boston.
The Children's Clown Care Unit was the first Big Apple Circus Clown Care program outside of New York state.
Despite press conferences by then-Vice President Al Gore and President-elect George W. Bush that threatened to short-circuit the event, the WBZ-Children's Hospital Telethon on December 13, 2000, was a huge success. WBZ-TV 4, which is Boston's CBS affiliate, has sponsored and televised the event for the last 18 years. Children's raised $1.75 million, surpassing its goal of $1.7 million, and set a new record when 3,700 callers pledged.
There were many high points at the telethon's three venues. At Children's, parties on the patient floors featured women's World Cup and Olympic soccer team member Kate Sobrero, a face painter and the Clown Care Unit. Patients in the Patient Entertainment Center were treated to magic tricks, songs and check presentations from various donors. At the WBZ studio, where the live call-in event was held, music played throughout the night and there were 12 check presentations bringing in more than $1 million. At the Toys "R" Us in Framingham, there was a visit by Red Sox infielder Lou Merloni, a Framingham native, who dropped by to lend his support and sign autographs.
A scene from the hospital's Patient Entertainment Center on Telethon night.
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"Dr. Folkman's War: Angiogenesis and the Struggle to Defeat Cancer" hit bookstores this year. The 366-page account of the development of the field of angiogenesis also tells the life story thus far of Judah Folkman, MD, director of the Surgical Research Laboratories and surgeon-in-chief emeritus at Children's.
Author Robert Cooke worked at The Boston Globe for 11 years but never covered Folkman's research. It was when he went to the New York newspaper Newsday, that his beat brought him into contact with the surgeon/scientist. Cooke became hooked on the idea of writing about Folkman's life and work after interviewing Folkman on his efforts to isolate a factor emitted by a primary tumor that could prevent its metastases from growing. In April 1998, Folkman agreed to cooperate exclusively with Cooke about his life and the work that led him and his colleagues to view blood vessel growth as a crucial element in cancer progression. At the time, Cooke did not yet have a publisher. That changed on May 3, 1998, when The New York Times published a front-page story with the now famous quote from Nobel laureate James Watson: "Judah is going to cure cancer in two years." Cooke signed a contract with Random House the next day.
"Dr. Folkman's War: Angiogenesis and the Struggle to Defeat Cancer" is available for $25.95 at most bookstores.
Anyone can get the advice of Children's world-renowned
specialists with "The Children's Hospital Guide to Your
Child's Health," a new reference book for pediatricians and
parents alike. With contributions from more than 75 medical professionals from Children's and other academic medical
centers in Boston, the book is divided into two distinct sec-
tions. The first half is written in a narrative form that pro-
vides concrete information about child development and
practical parenting tips for everyday life. The second half is structured like an encyclopedia and describes common childhood illnesses, injuries and conditions.
"The guide is written by experts who are in the trenches addressing the problems every day," says Howard Shane, PhD, clinical director of the Children's Communication Enhancement Center. "So physicians will feel secure in recommending a source that they recognize is based on up-to-date medical, surgical and behavioral principles and practices." Shane worked closely with Alan Woolf, MD, MPH, director of Clinical Toxicology, and Margaret Kenna, MD, director of the Cochlear Implant Program, to identify content and to edit the book.
"The Children's Hospital Guide to Your Child's Health" is published by Perseus Publishing and is available at Barnes and Noble, the Harvard Coop, Borders Books and Amazon.com for $40.
The fact that Children's Hospital Boston provides some of the most acutely needed care to children from all over the world is one reason it attracts celebrities to its halls. These distinguished visitors come to Children's to share smiles and autographs, along with conversation and cheer, with young people facing very tough medical challenges, whether it be cancer or epilepsy. Recent celebrity visits have included Boston Red Sox pitcher Tim Wakefield, Boston Celtics player Paul Pierce, and Boston Breakers Kim Calkins and Angela Hucles (not shown). Below, WBZ anchor and reporter Sara Underwood and a Children's patient join characters from The Nutcracker.
WBZ anchor Sara Underwood, on left, and patient Ashley Blake, pose with the Nutcracker and the Mouse King from the cast of the Boston Ballet production of The Nutcracker.
Celtics guard and co-captain Paul Pierce poses with a patient on 9 West.
Jillian Doroni and her mom Paula with Red Sox pitcher Tim Wakefield, who nearly threw a no-hitter in his next start after his visit.
The Children's Hospital community joined together to celebrate its research enterprise and to kickoff the construction of the new research building last spring. As part of the celebrations, the Public Affairs Department, with the help of the Children's Hospital Trust, taped a 12-minute video featuring many of the hospital's celebrated investigators and their research teams. Among those appearing in the video were Judah Folkman, MD, director of the Surgical Research Laboratories and founder of the field of angiogenesis; Michael Greenberg, PhD, director of Neurosciences; Stephen Harrison, PhD, Immunology; Nancy Andrews, MD, PhD, of Hematology/Oncology; and Bruce Zetter, PhD, senior research associate in the Surgical Research Laboratories.
Intellectual Property Office helps bring discoveries to market
Children's researchers are transferring their discoveries to benefit the public more quickly thanks to the efforts of the hospital's Intellectual Property Office (IPO). The IPO handles disclosure, patenting, marketing and licensing of new technologies developed by Children's researchers.
The IPO works with researchers to apply for invention patents, identify companies interested in translating the discoveries into clinical treatments and then negotiate and conclude licensing agreements. This process usually takes one-to-two years on average, while the process of getting discoveries to market can take anywhere from one to 10 years, depending on whether it involves clinical trials that ensure the safety of the application for humans. At the same time, the effort returns financial rewards to the hospital and the researchers when sales of products generated by the discoveries bear fruit.
"This process is beneficial to all involved," explains Louis Kunkel, MD, chief of the Division of Genetics. Kunkel cloned the gene responsible for Duchenne muscular dystrophy, and discovered the dystrophin protein as a means of detecting the severe neuromuscular disorder. "By patenting the discovery and soliciting interested industry partners, we can facilitate the transfer to patients. At the same time, if the discovery is marketable, the hospital reaps some of the financial reward," says Kunkel.
Kunkel's test for the gene mutation was given to several companies as a non-exclusive license. However, only one company, Geneca Pharmaceuticals, brought the product to market. In fact, the company's beginnings in 1989 were based solely on the dystrophin test, although the company was eventually bought out by Athena Neurosciences, a neuroscience disease diagnostic lab, and finally both became part of Elan Pharmaceutical PLC. The hospital continues to receive royalties for the test from Elan.
Through such partnerships, Children's has brought several therapies to the market over the past several years. Among them, are Neumega, also known as Interleukin 11, which prevents extremely low platelet counts during chemotherapy; and the cardiac occluder CardioSEAL, designed by Children's Chief of Cardiology James Lock, MD; and CircETTChek, an anesthesia valve tester designed by Stephen Corn, MD.
A variety of other treatments—some widely publicized—are in clinical trials. One such example is Endostatin, an angiogenesis inhibitor discovered in the laboratory of Judah Folkman, MD, director of the Surgical Research Laboratories.
"An added benefit is the collegiality and quality assurance created through this process," explains Donald Lombardi, chief intellectual property officer. "The discoverers are able to work closely with industry to advise on usage, improvements and developments to ensure the greatest benefit to patients."
The 105th running of the Boston Marathon® in April brought together Children's patients, volunteers and employees, and leading the way was someone who has been all three.
Katie Lynch, who works in the Center for Families, helped the Kids at Heart Marathon Team start out on the right foot with a 26.2-foot walk to raise awareness and money for Children's.
And while Katie's "marathon" was a small step compared with the distances traveled by her race compatriots, it was a major feat for someone weighing 35 pounds and standing 28 inches tall. Born with dwarfism and a tissue disorder that has required her to have many surgeries in her 26 years, Katie relies on a wheelchair for transportation and walks only on rare occasions.
The event brought together 120 marathoners, each of whom ran for a specific patient. The team raised more than $460,000 for the hospital, and Children's sponsored spectator sections in Wellesley and Brookline, where patients, families and friends cheered on the Children's runners.
The traditional Patriot's Day run brought to a close a weekend of events hosted by Children's. A pre-race reception, emceed by WBZ-TV's Bob Lobel, was attended by Lynch and the well-known father-son team of Rick and Dick Hoyt. Rick, who has cerebral palsy, has been treated at Children's throughout his life. Rick's father Dick pushes Rick in the marathon every year in a specially designed wheelchair.
Children's Hospital was on center ice during the 2001 State Farm U.S. Figure Skating Championships in January, featured prominently as one of the main sponsors and a major provider of medical care to the skaters participating in the event.
The event and sponsorship placed a spotlight on the Division of Sports Medicine and Department of Physical Therapy, including Sports Medicine director and co-founder Lyle Micheli, MD. Micheli, who was on the planning committee for the championships and has served as a traveling team physician for many of the United States Figure Skating Association teams,was selected as medical director of the 2001 championships in Boston.
Nearly 160 medical professionals from Children's volunteered their skills and time for a full scale 24-hour medical clinic, and provided coverage at the Fleet Center, the Matthews Arena and the Skating Club of Boston throughout the nine-day event. Thehospital's emergency department also opened its doors for competitors with more serious injuries, and more than 20 non-medical Children's employees volunteered to provide administrative and transportation assistance.
The event brought Children's significant local and national media exposure, as the event was carried in prime-time by ABC and ESPN. In addition, a Children's Hospital Boston advertisement featuring skater Michelle Kwan (below, left) was included in the program for the event, and the Children's name and logo were displayed prominently on the jumbo-tron and on ice-level advertisements in the Fleet Center.
Coordinating Community and Legislative Advocacy for Children
Just as it takes great pride in its world-class research, clinical care and teaching programs, Children's Hospital Boston is equally proud of setting new standards of excellence in community service.
The Office of Child Advocacy integrates the two previously separate departments of Government Relations and Community Benefits to advocate for children on the government and community levels, and ultimately make a real difference in the lives of children in Boston and across the state and nation.
Using the results of a comprehensive assessment of the health status of Boston's children and youth, the Office of Child Advocacy chooses its priorities in collaboration with the Partnership for Children Community Advisory Board. This year's targets span asthma prevention and treatment, injury prevention and access to health care as priority issues.
Working alongside community groups and providers, Child Advocacy seeks to develop, support and implement programs that protect the health and well-being of low-income children and adolescents living in Boston. As a founding member of the Boston Urban Asthma Coalition, for example, Children's has helped families address the needs of their children suffering from asthma and helped children understand their illness and live a full life. At the same time, the office pursues legislative remedies to raise awareness about priority issues on the local, state and national levels. While Community Benefits staff work directly with children suffering from asthma, Government Relations staff simultaneously support legislation calling for statewide documentation of the increasing prevalence of childhood asthma’Äîthe first step in identifying neighborhoods in the greatest need.
Child Advocacy supports the research and teaching missions of the hospital, as well. As a freestanding pediatric hospital, and unlike adult hospitals, Children's does not qualify for federal support for graduate medical education through the Medicare program. Child Advocacy was instrumental in creating a national effort to secure alternative funding. Now, those programs training the next generation of pediatric providers will receive federal support, allowing them to fulfill their teaching missions and ensure an adequate supply of pediatricians and pediatric specialists nationwide. Children's also partners with national advocacy groups to promote increased funding for the National Institutes of Health and other federal sources of research funding.
Boosting the work of the Child Advocacy Office is the Children's Advocacy Network (CAN), established in 2000 to enlist grassroots supporters, including employees, physicians, community leaders, patient families and other interested individuals, and more than 900 advocates.
By creating this infrastructure of advocacy among community citizens and leaders with the hospital's clinical, administrative, technical and financial staff, Child Advocacy has built a powerful engine to represent the interests of vulnerable children in times of complex social, political and economic change.
To learn more, or to support Children's Hospital Boston's advocacy efforts, visit www.childrenshospital.org/about/childadvocacy.
Curious George and his friend, the man with the yellow hat, returned to Children's Hospital Boston on July 13 to help celebrate the hospital's status as the number one pediatric hospital in the country, as reported by the national magazine U.S. News & World Report.
George's first visit to Children's is recorded in the well-loved children's book, "Curious George Goes to the Hospital," written by Margaret Rey and illustrated by H.A. Rey. Among those employees welcoming the characters back was Myra Fox, director of Child Life Services, and role model for the fictionalized "hospital play lady."
"The Curious George books were already very popular," she recalls. "So, when the Reys asked if they could visit Children's to get material for another story, we were all very excited."
Fox, a 37-year veteran of the hospital, was among those staff members who provided the Reys a tour of the hospital in 1966.
