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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
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                                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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