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Leaders in — St. Louis shrinershospitalsforchildren.org | Vol. 2, No. 1 | Spring 2011 Protect your kids from burn injuries at home | 10 St. LouiS Meet Bryan, a St. Louis Patient Ambassador | 2 New Treatment Helps Children with Hypophosphatasia | 15 Helping St. Louis Fathers Become “All Pro Dads” | 16 St. LouiS oRthoPAEdiCs | 314-432-3600 Meet Bryan, REsEARCh a st. Louis Patient Ambassador EduCAtion i have been a patient at shriners is the world’s leading expert in this hospitals for Children® — st. Louis unusual disease but is also making since before I can remember. When I progress in treating it effectively. But was 6 months old, a doctor diagnosed the doctors do not just research my CARE me with a rare bone disease called disease. There are many metabolic X-linked hypophosphatemia, which is bone diseases they are researching Above: Bryan is a patient at Shriners Local News for St. Louis a genetic form of rickets. My doctor, and treating at the Research Center. Michael P. Whyte, is one of the world’s One of my favorite places at the Hospitals for Children® — St. Louis. leading research doctors in metabolic hospital is Recreational Therapy, bone diseases, and I am lucky that “RT” for short. RT is a huge room Because I have been coming to “ he is right in my backyard as the Shriners Hospitals for Children® medical and scientific director of the — St. Louis for a long time, there are Center for Metabolic Bone Disease Lots of the always familiar faces to greet me, and Molecular Research at Shriners many of whom know me by my first Hospitals for Children® — St. Louis. nurses are the name. Lots of the nurses are the While the disease that I have is same ones who same ones who cared for me when considered rare, it has an incidence I was a baby. They have watched of about one in 20,000. Hundreds cared for me when me grow up, which I am sure makes of kids from all over the country come to Shriners Hospitals for I was a baby. They them feel good, seeing how I have gotten better throughout the years. have watched me ” Children® — St. Louis to get expert But it makes me feel good, too, care from a specialist who not only grow up. because I can feel at home when I come to the hospital. People know me there and are happy to see me. And that says a lot about Shriners with all kinds of things to do like Hospitals for Children® — St. Louis. video games, basketball, pool and foosball tables, a piano, board games and other fun stuff. It is sincerely, not only therapy to keep kids using their hands, running Bryan around or wheeling around, as the case may be, but it is also a great diversion so that we Make a Difference today! do not focus too much on To learn more about how any pain or discomfort. And you can support the it is a lot of fun to meet life-changing care, innovative other kids. There is always research and medical education something to keep us busy provided by Shriners Hospitals and to help us feel at home. for Children®, please visit us You never get bored! at www.donate2shc.org. At left: Bryan programs the light board at a local drama group for a theater production of “Beauty and the Beast.” 2 What to Know About Burn Care About uS CAre eduCAtion reSeArCh PAGE 4 PAGE 12 PAGE 10 PAGE 5 Changing the World Award of Gratitude Burn Prevention and Advancing Burn Care through Caring for Kids from Mexico Awareness Efforts PAGE 8 PAGE 14 PAGE 11 PAGE 6 Time Line Dan Caro: Turning Sharing Our Expertise Understanding of Burn Care Adversity into Joy Keloid Scarring What Does Shriners Hospitals for Children® Stand For? Our miSSiOn About Shriners Hospitals for Children® Shriners Hospitals for Children® is a health care system that is The mission of Shriners world renowned for pediatric specialty care, innovative research, and Hospitals for Children® is to: outstanding teaching programs for medical professionals. Children up to • Provide the highest quality age 18 with orthopaedic conditions, burns, spinal cord injuries, and cleft care to children with lip and palate are eligible for care and receive all services in a family- neuromusculoskeletal conditions, burn injuries centered environment, regardless of the patients’ ability to pay. and other special health care needs within a compassionate, Spokane Minneapolis family-centered and Portland Springfield Montreal collaborative care environment. Boston • Provide for the education of physicians and other health care N. California Chicago Erie professionals. Philadelphia Salt Lake City Cincinnati • Conduct research to discover new knowledge that improves Lexington the quality of care and quality of Los Angeles St. Louis life of children and families. Greenville This mission is carried out without Shreveport Honolulu Tampa regard to race, color, creed, sex or Houston Galveston sect or ability of a patient or Hospital Specializing in family to pay. Burn Care = Black Dot Mexico City shrinershospitalsforchildren.org Spring 2011 3 About uS ShrinerS hoSpitAlS for Children® Changing the World through Caring for Kids reSeArCh eduCAtion Shriners hospitals for Children®, a health care system Shriners Hospitals for Children® conducts research of 22 hospitals, helps thousands of kids every day. that adds to the worldwide body of medical knowledge The first Shriners Hospitals for Children® opened in and provides insights that lead to improved treatment Shreveport, La., in 1922, and by the end of that decade, methods and better outcomes. 13 more Shriners Hospitals for Children® were in The health care system also shares its expertise with CAre operation. Now, the Shriners Hospitals for Children® the medical professionals of tomorrow. In the past – 20 in the U.S. and one each in Canada and Mexico – 20 years, more than 9,500 physicians have received make up the largest pediatric sub-specialty health care residency education or postgraduate fellowships at Our Mission system in the world. Shriners Hospitals for Children®. The hospital system has the largest full-time staff of This three-part mission to provide care, conduct pediatric orthopaedic surgeons in the U.S. In addition, research and offer medical education has one purpose: the Shriners Hospitals for Children® specializing in to improve the lives of children. Be a part of the mission burn care are the only hospitals specifically dedicated by going to www.donate2SHC.org and clicking the to the treatment of pediatric burns, and the health care “Donate Now” link. All gifts, big or small, are welcome. system’s spinal cord injury rehabilitation program is well recognized internationally. About the Shriners Fraternity ShrinerS hoSpitalS for Children® was founded by Shriners of North America (now known as Shriners International), a fraternity that began in 1872, and is based on fun, fellowship and the Masonic principles of brotherly love, relief and truth. There are approximately 340,000 members, with temples and clubs located around the world. Go to www.shrinershq.org and click “Shriner Primer” to learn about the history and future of this organization that counts President Gerald Ford, astronaut “Buzz” Aldrin, country star Brad Paisley and race car driver Sam Hornish, Jr., as members. 4 About uS AdvAnCing Burn CAre CAre eduCAtion in order to provide the best, most been proven to increase a patient’s Shriners Hospitals for Children® innovative treatment to patients potential for survival, improve long- are dedicated to improving with burns and burn-related injuries, term function and decrease the need long-term outcomes for patients Shriners Hospitals for Children® for reconstructive surgeries. with burn injuries, especially in reSeArCh conducts constant medical research Advances in fluid resuscitation the areas of scar development, in the field. include the creation of a formula rehabilitation and psychological Currently, Shriners Hospitals for based on body surface area and adjustment. For example, using Children® is funding approximately body weight, which is more pressure garments helps minimize 41 research studies involving appropriate for pediatric patients scarring, and encouraging patients Advancing Burn Care different aspects of burn injury and is now used worldwide. to use an appropriate exercise and treatment. Our research studies also proved program decreases the need for that beginning resuscitation reconstructive surgery, improves Disciplined Research Leads to treatment within two to four hours quality of life and eases return to the Better Burn Care of injury improves survival, organ home community. Researchers at Shriners Hospitals function and long-term outcomes for Children® are responsible and of patients with severe burns. Also, Educating Tomorrow’s Experts recognized for advances in burn understanding that inhalation injury Shriners Hospitals for Children® care that significantly improve the causes fluid to build up in the lungs, shares its expertise in burn care lives of those with severe burns, and that additional fluid resuscitation and research through academic especially in the areas of: actually reduces this buildup, has led affiliations and different medical • Burn-wound treatment to a new worldwide standard of care outreach programs. The hospitals and healing for fluid resuscitation in pediatric offer residency and fellowship • Fluid resuscitation (tightly burn patients. programs, and opportunities for controlled intravenous fluid In addition, researchers at graduate students and postdoctoral administration) Shriners Hospitals for Children® researchers interested in this field. • Infection control have contributed to increased The emphasis on research • Nutrition and metabolism understanding of hypermetabolism and education is proof of the • Inhalation injury and the nutrient requirements of commitment Shriners Hospitals for patients with burn injuries. Children® has to determining, as Shriners Hospitals for Children® well as providing, the best care for pioneered the groundbreaking The Goal: Improved children with practice of improving wound Quality of Life burn injuries. healing through prompt surgical The effects of burn injuries may removal of burned tissue. This has last a lifetime, and researchers at Our research relies on Your Generosity The Shriners Hospitals for Children® health care system depends on donations to fund all its programs, including research. For information on ways you can support this effort, please visit www.donate2SHC.org. To see the how Shriners Hospitals for Children® helps children get better, please visit shrinershospitalsforchildren.org and click “Take a tour.” shrinershospitalsforchildren.org Spring 2011 5 About uS iMproVinG CAre reSeArCh understanding Keloid Scarring eduCAtion Keloids are disfiguring scars that “I became interested in keloid By advancing our understanding can impair the quality of life of scarring because of a patient with of keloid formation, novel therapies burn survivors. Unlike normal scars, a particularly severe case,” said Dr. can be developed, leading to keloids are overgrowths of scar Supp. “One of our plastic surgeons improved functional outcomes and CAre tissue that spread to adjacent skin asked if we could do something to enhanced quality of life for and resist treatment. It is not clear figure out why this happens.” burn survivors. why only some patients are at risk Dr. Supp and her team have This project is one of 41 research Understanding Keloid Scarring for keloid formation; they are more analyzed the genes that are turned initiatives related to developing prevalent among darker-skinned on or off in keloid skin cells a better understanding of burn individuals and younger patients. compared with normal skin cells. injuries and treatment currently Dorothy Supp, Ph.D., a researcher They identified some key differences being funded by Shriners Hospitals at Shriners Hospitals for Children® — that can help shed light on why cells for Children®. Cincinnati, is the lead investigator of in keloids give rise to abnormal Learn more about the health a project to discover and understand scars. The researchers have also care system’s commitment to the molecular basis for keloid created models of keloid scars research and to “Changing the scarring in order to develop more that will be used to test other World through Caring for Kids,” at effective treatments. potential treatments. shrinershospitalsforchildren.org. research in Action raymond f. novak, ph.d., Corporate Dr. Novak’s academic career includes serving direCtor of reSearCh for Shriners as a professor of pharmacology, with Hospitals for Children® has a wealth of a joint appointment in anesthesiology, at investigative, teaching and professional Northwestern University Medical School in service experience. Clearly, he loves to teach, Chicago, and being both the founding director and to help everyone understand what of the Institute of Environmental Health research is. Sciences and a professor of pharmacology at “Everyone does research,” Dr. Novak Wayne State University in Detroit. said. “‘When you’re buying a car, you do In addition to teaching, Dr. Novak is an fundamental research. I break it down into established investigator who is very well- four parts: known in the field of environmental health 1. You need a better car – that’s sciences. He is also working to understand your hypothesis. causes of hypertension in children. 2. You explore what’s available – Shriners Hospitals for Children® is at that’s method. the forefront of medical discovery in 3. You exercise judgment – many pediatric disciplines. that’s evaluation. Get a closer look by going to 4. You determine which product best shrinershospitalsforchildren.org meets your needs – that’s conclusion.” and clicking “Research.” 6 About uS Shriners hospitals for Children® to take CAre active role at meeting mar Staff from the eduCAtion 29 four Shriners tue Hospitals for Children ® that treat burn injuries will be actively involved in sharing their knowledge at the reSeArCh American Burn Association’s annual meeting, scheduled for March 29-April 1 in Chicago. Above: A Camp Ytiliba counselor and patients at the Shriners Hospitals for Children® The burn care team from Back to Being Kids summer camp in Oregonia, Ohio. Bottom: A camper holds up her fresh catch. Shriners Hospitals for Children® — Northern California will back to being Kids be making approximately 15 presentations ranging from burn prevention to studies of the today, patients with severe burn For example, Shriners Hospitals use of transparent face masks. injuries — even those affecting as for Children® — Cincinnati offers In addition, staff from Shriners much as 90 percent of their body Camp Ytiliba every summer. Hospitals for Children® — Boston — can survive and go on to live Typically, more than 40 children will moderate at least eight productive, fulfilled lives. from as far away as Florida and sessions of the meeting, as well However, the recovery process Wisconsin attend. While they are as participate in presentations. that must occur first is long and enjoying fishing and canoeing, they Staff from the Cincinnati difficult, involving far more than are also accepting new challenges, hospital will be making expert medical care. Patients with gaining confidence and rebuilding six presentations, with severe burn injuries must often deal self-esteem. The kids at Camp representation on two others. An with accepting major changes in Ytiliba have an opportunity to be interesting topic being covered their appearance. with others who share the experience by the Cincinnati team is the To help young burn survivors of a burn injury, which helps them “evaluation of sleep efficiency adjust to these new differences, realize they are not the only one during the rehabilitative phase of and get back to the business of just coping with these differences. burn injury.” being a kid, Shriners Hospitals for At Shriners Hospitals for Contributions from Shriners Children® offers several specialized Children®, efforts to Hospitals for Children® — programs. These include the child improve the quality of Galveston include life department’s work (especially on life of our patients are as two presentations behalf of inpatients), the transitions important as providing by Michael Serghiou, program for older kids, and special excellent medical care. director of outpatient camp experiences. and rehabilitation services. Learn about the Support Camp Ytiliba! American Burn Ytiliba is not an ancient native tribe — it is just Association’s work at “ability” spelled backward. Some people look at www.ameriburn.org. our campers and see something backward and different, but when the campers look in the mirror, they see their strength and ABILITY! You can keep Camp Ytiliba going this summer by giving generously at www.donate2SHC.org. shrinershospitalsforchildren.org Spring 2011 7 A Time Line of Burn Care From creation of our burn hospitals in the 1960s to our cutting-edge work in 2011, Shriners Hospitals for Children® has always led the way in caring. Cincinnati Shriners hospitals for Children® opens hospitals specializing in pediatric burn care in galveston, texas (1966), Cincinnati (1968) and boston (1968). Widespread use of preSSure garmentS, a concept 1960s developed at Shriners Hospitals for Children®, leads to improved cosmetic outcomes. 1970s 1980s • In response to growing awareness of a need for pediatric burn care, research • Research in excision, grafting and and education, the governing intravenous feeding at our hospitals results body of the ShrinerS in drastic improvements in survival rates go to page 10 to find out how organization paSSeS a and length of stay. to prevent burns in your home. reSolution to build and • Skin banking – a precursor of future visit www.burnawareness.org operate pediatriC burn tissue, bone and skin procurement – is for free educational materials hoSpitalS. pioneered at Shriners Hospitals for • The organization approves Children® — Cincinnati. building three hospitals that will • Shriners Hospitals for Children®, along specialize in pediatric burn care. with United States Fire Administration and • Awareness of burn care is Consumer Product Safety Commission, raised throughout the medical work together to identify burn Boston community, and the American prevention programS for Burn Association is SChoolS and fire departments. founded (1967). The importance of helping children with burn injuries successfully return to school begins to be recognized; Shriners Hospitals for Children® — Boston is the first burn hospital to initiate such a program. 8 About uS • The foCuS of Care iS expanded to include preparing patients for a successful return to their homes and communities through summer camp and social acceptance initiatives. CAre • Distraction techniques and innovative therapies are introduced to encourage exercise as well as reduce pain, anxiety and stress. eduCAtion As advances in care and treatment improve • Shriners Hospitals for Children® that treat burns survival rates for children with severe burn expand services to include care for nonburn injuries, the foCuS on pSyChologiCal conditions such as port wine stains, congenital and SoCial iSSueS for patientS ear deformities, and other complex wound and with burnS expandS, and school skin conditions. reSeArCh re-entry programs are formally adopted as a • The health Care SyStem expandS itS program of Shriners Hospitals for Children® burn prevention effortS, and begins in order to better meet these needs. The participating in local health fairs and offering initiative provides resources that encourage prevention education programs to the community, A Time Line of Burn Research and Care patients to return to school regardless of severity especially schools. of the burn injury. (Above: Daniel Happy, a patient who took full advantage of the re-entry program. See more on Happy’s story on page 13.) 2000s 1990s Shriners Hospitals Northern for Children® — California northern California • Research efforts expand to include CliniCal openS, serving outCome StudieS. children with • Shriners Hospitals for Children® continues to orthopaedic, demonstrate and be recognized for leadership. All burn and spinal four burn hospitals have leaders who have served as cord injuries. president of the American Burn Association. Some of the hospitals have additional representation on the ABA’s board of directors. • The hospitals in Boston and Cincinnati reCeive preSS ganey Summit awardS for extraordinary patient satisfaction. • Early surgical excision and grafting reduces infections, • Shriners Hospitals for Children® — shortens hospital stays and improves cosmetic outcomes. Northern California medical staff • Shriners Hospitals for Children® adds outpatient clinics at member leads a national burns the burn hospitals to provide continued care after patients outcomes project. are discharged. • Cincinnati Transport team • Shriners Hospitals for Children® expands burn awareness named “Fixed Wing Team of the and prevention efforts and creates Burn Awareness Week Year” by American Association – an annual national education campaign to reduce the of Medical Services. number of burn injuries in children. • Three of the burn hospitals host or co-host the World Burn Congress. shrinershospitalsforchildren.org Spring 2011 9 About uS burn prevention and Awareness efforts reSeArCh burn prevention is an important endeavor of Shriners Hospitals for Children®, which is why the health eduCAtion care system began its Burn Awareness campaigns more than 20 years ago. Every year, the first full week of February is to dedicated Burn Awareness Week, the kickoff of a yearlong educational campaign aimed at burn prevention. The 2011 campaign focuses on safety at home. Previous years’ efforts have emphasized prevention of gasoline and gasoline-related burn and scald injuries. Some tips from the 2011 campaign, Safety Begins at Home, include the following: CAre 1 2 3 Burn Prevention and Awareness Safety in the Kitchen Safety in the Bathroom Safety throughout the Home • do not throw water on a • Supervise children in the bath. • use electrical outlet covers. grease fire. put a wet cloth • Have a latch bolt on the outside • Unplug electrical appliances over the pot or pan. of the bathroom door so young when not in use. • Keep children away from children cannot enter the • Install an appropriate number everything that is hot. bathroom unsupervised. of smoke detectors – one near • If young children are in the • The water in a child’s bath should each bedroom, one at the top home, use placemats rather not exceed 104° F. Set your water of each stairway and one near than tablecloths. heater no higher than 120° F. the planned escape route. • Keep all hot items and all • Run cold water in the tub first, • Keep matches out of reach of appliances out of reach of and then add warmer water. younger children, and allow children and away from edges • Before placing a child in the tub, older children to use them only of tables and counters. test the water temperature with when supervised. • Establish a kid-free zone, your hand. If the water feels hot, it • Properly store flammable liquids. where children can be is too hot for a child. • Have the electrical wiring watched but are out of the • When placing children in the in your house checked kitchen when it is in use. bathtub, face them away from professionally every 10 years. • Keep pot handles on the the faucets and as close to the • Never use gasoline for anything stove turned inward. other end of the tub as possible. other than to fuel an engine. Get Free Burn Awareness Posters, Stickers and more While Burn Awareness week in February is a targeted, specific effort, burn prevention is an ongoing effort, and a variety of free educational materials are always available. If you are interested in receiving some, please visit www.burnawareness.org. You can learn more about taking good care of your family at www.familyfirst.net. 10 About uS ShAring our expertiSe CAre eduCAtion Our Burn Centers Spread Their Knowledge to the World Shriners hospitals for Children® is noted around the Partnering with the American Burn Association world for its expertise in pediatric burn care. The health In addition to supporting the Phoenix Society and its reSeArCh care system takes that responsibility quite seriously, and programs, Shriners Hospitals for Children® also has shares its knowledge and experience. a strong leadership presence in the American Burn For example, Shriners Hospitals for Children® — Association (ABA) – the first vice president and a Galveston was a cohost of the Phoenix Society for Burn board member are on staff of our Northern California Survivors’ 22nd annual World Burn Congress, held in hospital. In addition, all four of our hospitals that treat Sharing Our Expertise Galveston in October 2010. Our Cincinnati hospital burn injuries have chief or assistant chiefs of staff will host the 2011 conference. The annual World Burn who have served as president of the ABA. Shriners Congress attracts hundreds of burn survivors and Hospitals for Children® also has an important role in their families, caregivers, burn care professionals and other professional organizations related to burn care, firefighters. The different groups – all concerned with for example, Ronald Tompkins, M.D., Sc.D., chief of caring for people with burn injuries in some way – learn staff, Shriners Hospitals for Children® — Boston, is past from one another through sharing life experiences and president of the International Society for Burn Injuries. stories, medical information and support techniques. At least 800 attended the conference, including many patients from the Shriners Hospitals for Children® that treat burns and burn-related injuries, and their families. Attendees came from across the U.S., Canada, Mexico and even India. Find out how the Phoenix Society for Burn gAlveSton northern Survivors helps people with burns live life to the CAliforniA fullest by visiting www.phoenix-society.org. To apply for care at a burn care center, visit CinCinnAti shrinershospitalsforchildren.org and click “Apply for Care.” UBelong: A New Program The 2010 conference included the first-ever UBelong: Families, Teens and Kids Together in Burn Recovery program, for children ages 7 to BoSton 17. Many of the more than 40 participants were our patients. The program included activities and discussions to build social skills and self- awareness for the children, as well as programs to help the families of children with burn injuries understand the impact of the injury on the family, and how to best support one another. At the conference, Bernadette Martinez-Wright, a clinical social worker for Shriners Hospitals for Children® — Northern California, was awarded the Alan and Delwyn Breslau Award for her work in developing the UBelong program. shrinershospitalsforchildren.org Spring 2011 11 Thank You From Mexico on July 20, 2010, felipe Calderón, president of for their prompt Mexico, publicly acknowledged the efforts of support.” He Shriners hospitals for Children® on behalf of children also said his wife injured in the fire at the ABC day care center in had followed Hermosillo, Mexico, on June 9, 2009. the treatment, progress and medical attention provided More than 140 children were at the day care center by Shriners Hospitals for Children®, and clearly the when the fire erupted; more than 40 lost their lives and attention given the children was “as if they were their at least another 40 were hospitalized. Nine children, own children, and we are very, very grateful.” with burns covering from 17 to 80 percent of their body surface, were treated at Shriners Hospitals for Children® A Humbling Moment — Northern California, and three at Shriners Hospitals Peter Armstrong, M.D., chief medical officer for for Children® — Cincinnati. At least five children were in Shriners Hospitals for Children®, was on hand critical condition on arrival. to accept a beautiful plaque from the Mexican government. Dr. Armstrong was most touched by Going Where Help is Needed President Calderón’s comment that Shriners Hospitals In the days following the fire, medical teams from the for Children® looked after the children as if they were Northern California and Los Angeles Shriners Hospitals their own. While that is extremely high praise, Dr. traveled to Hermosillo to assist Armstrong said, “That is what Shriners Hospitals for local health care providers. Children® does for every child we treat. That is just what Later, children with injuries we’re all about.” were also seen at the outreach Still, it was quite an honor to have that deep level of clinics that Shriners Hospitals dedication and commitment recognized by a sitting for Children® — Northern president. “This was a very proud day for Shriners California holds in the area Hospitals for Children®,” said Dr. Armstrong. “It is not on a regular basis. As is true often that a president of a country so publicly praises for all patients of the health our organization.” care system, these children will The Mexican government, together with Shriners be cared for until they are 18, Hospitals for Children®, is committed to improving regardless of their ability to pay medical knowledge of and care for burn injuries in for services. Mexico, and is already funding two one-year fellowships Of the efforts of Shriners for burn surgeons in partnership with the University Hospitals for Children®, President of California, Davis, School of Medicine. See the latest Calderón said, “We are deeply grateful developments at shrinershospitalsforchildren.org. 12 About uS Daniel is Still Smiling CAre Despite Challenges eduCAtion when a plane CraShed into Daniel Happy’s Sanford, Fla., home in 2007, his life changed forever. Daniel sustained second- and third-degree burns over 95 percent of his body. His parents sustained reSeArCh burns as well, and his 4-year-old sister Gabrielle was killed in the horrific accident that made national headlines. Dr. Peter Armstrong, holding plaque, Only hours after the crash, Daniel was airlifted from Burn Care Success Stories accepts an award of gratitude from a local hospital to Shriners Hospitals for Children® Mexican President Felipe Calderón. — Cincinnati. He spent seven months in the hospital undergoing multiple surgeries and enduring grueling physical therapy. Daniel’s mother decided it would be in her son’s best interest to relocate to Cincinnati so he could continue his treatment on an outpatient basis. When Daniel was ready to return to school, the hospital’s school re-entry program helped ease him back into the school setting by making the rounds at 35,000 Feet providing his classmates with lessons on empathy and acceptance. Extremely outgoing and a good student, 13-year old Daniel flourished at his new the Chief mediCal offiCer for Shriners Hospitals for Children®, school and even started a campuswide fundraising the largest pediatric sub-specialty health care system in the world, program called “Happy Tabs for Shriners Hospitals.” Peter Armstrong, M.D., has a humorous way of looking at his job. In recognition of his accomplishments, Daniel “I fly around in airplanes,” said Dr. Armstrong, an orthopaedic was selected to represent Shriners Hospitals for surgeon for more than 30 years. Though he may be a frequent flyer, Dr. Children® as one of two national patient ambassadors Armstrong is also a frequent visitor to the 22 hospitals in the system for the 2010-2011 year. You can support kids like and the 23 chiefs of staff he oversees. Each visit allows him to provide Daniel by going to www.donate2ShC.org. needed support, to see that the best practices are in place, and to share the wealth of research and education that all of the Shriners Hospitals for Children® are involved in around North America. “I see it as my job to keep the leadership informed on every level,” said Dr. Armstrong. “We’re a team, and the motivation among all the team members is strong. Every doctor is here because of the mission.” Part of that mission is passing on the research findings that are developed by the doctors in the system. “You can’t have this level of care without the research that we do,” he said. At the end of a long day of air travel, Dr. Armstrong does not feel the jet lag that others might. “When you have the opportunity to do something for children that will help improve their lives, there’s no other feeling that beats that.” For more information about our physicians, please visit us at shrinershospitalsforchildren.org. shrinershospitalsforchildren.org Spring 2011 13 About uS turning Adversity into reSeArCh Achievement and J y “ eduCAtion dan Caro is one busy guy. “The hospital staff were endlessly He released his first book this I don’t look at supportive, and instrumental in year, “The Gift of Fire: How I Made anything as negative. me finding my own way, and my Adversity Work for Me,” and has independence – both physically and been traveling all over the place, It’s fun and exciting emotionally,” Caro said. “I never saw to work through CAre sharing his philosophy of life, myself as different because of the fulfilling more than 80 speaking support of Shriners Hospitals for anything,” Caro said. engagements, including being a Children® and the Shriners.” “I wouldn’t trade a Dan Caro: Turning Adversity into Joy featured speaker at the World Burn Congress in Galveston, Texas, in second of my life. I A Musician and Motivator October. He is also a successful Evolves musician and an ambassador for was designed to As a result of the burn injuries, Caro experience and ” Shriners International. And, he lost his right hand, and most of his has a new passion for skiing. left, and was severely scarred. In the Caro is also a very positive person. share joy. mid-1980s, reconstructive surgery “I don’t look at anything as gave Caro the use of a movable negative. It’s fun and exciting to This inspiring, active person thumb on his left hand. This allowed work through anything,” Caro said. nearly lost his life 29 years ago, at him to pursue a lifelong dream of “I wouldn’t trade a second of my life. the age of 2. There was a gasoline playing the drums. And when he I was designed to experience and explosion in the family garage, and played, Caro’s style, passion and share joy.” Caro sustained third-degree burns ability were noticed; he became a on more than 70 percent of his body. known figure on the New Orleans After being rescued by firefighters, music scene. he was rushed to a hospital in New Although performing provides Orleans. Doctors caring for him did audiences with a glimpse of his not expect Caro to live more than a personality and perspective, Caro few days; he was in such pain that his wanted to give more to people. And parents prayed God would take him so, as he said, he decided to “take to heaven. the drums on stage and add words.” This has become Caro’s basic – and Putting a Boy Back Together highly successful and popular – Ultimately, he was flown to Shriners format for his inspirational and Hospitals for Children® — Boston, keynote speeches. where he underwent about 50 No matter how powerful the surgical procedures to, as he story, Caro is still a musician. For said, “put him back together.” In him, this is not a career change, 1989, Caro became a patient at “it’s an evolution.” Shriners Hospitals for Children® — Galveston, where he also had Visit www.dancaro.com about 30 surgeries that would to read about more provide long-term benefits and about Caro and his improve his quality of life. latest endeavors. Above: Dan Caro Photo by Paula Casentini. 14 ABout us new Treatment CARE helps Children with hypophosphatasia EduCAtion hypophosphatasia is a rare, and children with hypophosphatasia. stealing home base and otherwise sometimes fatal, metabolic disease In a recent and ongoing study acting like typical, healthy kids. that affects the development sponsored by Enobia Pharma in “ENB-40 is a promising therapy of bones and teeth. An enzyme Montreal, Canada, children with for these children. There was clear- REsEARCh deficiency in this condition disrupts hypophosphatasia who were cut radiographic X-ray improvement; a process called mineralization, in given injections of ENB-40, a also walking speed, agility, pain which calcium and phosphorus are bone-targeted fusion protein and disability indices improved, deposited in developing bones and containing the mission enzyme, with a high degree of statistical teeth. Mineralization is critical for the achieved significant improvements significance. More importantly, St. Louis formation of bones that are strong in bone health, muscle strength, their functional improvement was and rigid. agility, endurance and mobility remarkable,” Dr. Whyte said. sometimes within weeks of Promising New Therapy beginning treatment, said Michael Making It to First Base Enzyme replacement therapy using P. Whyte, M.D., a physician The study has thus far yielded a “ bone-targeted tissue-nonspecific number of heartwarming anecdotes, alkaline phosphatase (TNSALP) is a according to Dr. Whyte. “There was promising experimental treatment for One of our a boy who wanted to make it to first patients wanted base in T-ball before being tagged out. He was not able to run because of his to make it to first wobbly gait, but after three months of this new therapy, he improved so base while playing much that he became ‘all-county’ for T-ball before being ” his T-ball team and represented at the state level,” said Dr. Whyte. “We tagged out. have seen parents who were planning for their disabled child by starting to adapt their homes to accommodate specializing in endocrinology and such a boy or girl, and suddenly they metabolism at Shriners Hospitals were startled to find that what they for Children® — St. Louis. have is essentially a fully functioning, “I have been doing work in rambunctious child. Those are the this field for 35 years and have anecdotes that we love to hear, and tried a variety of treatments for there are many of them.” hypophosphatasia without much success,” said Dr. Whyte. “The Refer a Patient results with this new treatment To refer a patient to Shriners have been extremely gratifying.” Hospitals for Children® After receiving thrice-weekly — St. Louis, call the patient referral injections of ENB-40, children line at 813-866-7740. You can who were barely able to walk up also e-mail patientreferrals@ stairs were now climbing trees, shrinenet.org for referrals. Photo is for illustrative purposes only. shrinershospitalsforchildren.org Spring 2011 15 nonprofit org u.s. postage Leaders in paid sHriners HospitaLs for Vol. 2, no. 1 | spring 2011 CHiLDren ShRineRS hoSPitaLS foR ChiLDRen® PO Box 31356 Tampa, FL 33631 Public relations Marlena Lagina-Kleine, Vice President, Communications, Development and Public Relations Roma Lane, Corporate Director, Public Relations, Communications and Marketing Amy Ritzel, Manager, Marketing and Communications Victoria Beck, Senior Editor and Writer Contact shriners Hospitals for Children® Phone: 813-281-0300 Please Recycle 10418MU shriners Hospitals for Children® — st. Louis | shrinershospitalsforchildren.org helping st. Louis Fathers Become “all Pro dads” On Saturday, December 4, nearly 1,400 fathers Above: Dads and their kids enjoy and their kids rushed onto the practice field at face painting by Shriner clowns in the St. Louis Rams’ training facility for the All Pro the hospital’s “Fun Zone.” Dad Father and Kids Experience, sponsored by their child’s eyes, tell him or her “I love Shriners Hospitals for Children® — St. Louis. you” and give their child a 30-second full-contact bear hug. the hospital teamed up with former with strong parents and striving to be a During the event, before and after the nFL player Aeneas Williams, the strong parent for his four children. All Pro Dad activities, Shriners Hospitals St. Louis Rams and several other sponsors “There is one thing about being a dad: for Children® — St. Louis and the Shriners to partner with the national nonprofit You do not need the supernatural level fraternity hosted a “Fun Zone” for kids Family First and bring its fatherhood of talent that is required in the NFL to and dads that included clowns, balloon program, All Pro Dad, to St. Louis. be an All Pro Dad,” he said. “You do not animals, face painting and activities This hands-on football-themed have to be a perfect dad; you just have such as wheelchair hockey to help kids event provided inspirational bonding to spend time with your kids and be learn (in a fun way) what it is like to have opportunities for dads and their kids. involved. What made a difference in my a disability and how it does not have to Aeneas said the event had special life was my dad’s mentorship to me.” stop them from having fun. meaning for him, having grown up All Pro Dad volunteers and staff members used football-themed activities and drills to help teach dads lessons Save the Date! about becoming closer to their kids and The next All Pro Dad event to help kids reach out to their dads. A is scheduled for Saturday, favorite activity for many was the station April 16 in Tampa, Fla. To learn more, where coaches asked dads to look in please visit familyfirst.net. At left: Hospital staff members and volunteers host a few rousing games of wheelchair hockey so that kids with and without disabilities can participate in the same game.
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