2003 PBTF Active Grants _ Programs by mudoc123


									                               PEDIATRIC BRAIN TUMOR FOUNDATION
                                                                                                          January 2004   Volume 9, No. 1

2003 PBTF Active Grants & Programs
                                                                                                 • Investigational New Drug and Reagent
T    housands of dedicated people
     support the Pediatric Brain Tumor
Foundation’s mission to find the cause
                                                                                                   PI, Carol Wickstrand, PhD
and cure of childhood brain tumors.                                                              • Pilot Project Core
Thanks to their wonderful efforts, the                                                             PI, Darell D. Bigner, MD, PhD
Foundation was able to fund dozens of
worthy research projects and programs.
                                                                                                 Translational Research Project Grant
The total commitment of funds for
active 2003 grants and PBTF programs                                                             • Darell Bigner, MD, PhD, Duke
exceeded $4 million.                                                                               University Medical Center

Basic Research Grants                                                                            Society of Neuro Oncology
• Glenn T. Gobbel, DVM, PhD, Univ.                                                               • Sponsor of Annual Meeting Poster
  Pittsburgh                                                                                       Sessions
                                              Photo courtesy of Duke University Medical Center
• G. Yancey Gillespie, PhD, University                                                           • Basic Research Award of Excellence,
  of Alabama at Birmingham                                                                         Erik J. Uhlmann MD, Washington
                                         • Alyssa Reddy, MD, PhD, University of                    Universtiy School of Medicine
• Hugo Bellen, DVM, PhD, Baylor            Alabama
  College of Medicine
                                         Pediatric Brain Tumor Foundation
• Juan Fueyo, MD, MD Anderson                                                                    Central Brain Tumor Registry
                                         Institute at Duke
  Cancer Center                                                                                  • Epidemiology Grant
                                         Director Darell Bigner, MD, PhD
• Rosalind A. Segal, Dana-Farber
                                           Research award to establish a research
• James Rutka, Labatt Brain Tumor        institute at Duke University Medical                    Family Support Program
  Center, Canada                         Center dedicated to pediatric brain                     • 24 College Scholarships funded by the
• David Ashley, MD, PhD, Murdoch         tumor research. (more info about PBTFI                    Pediatric Brain Tumor Foundation
  Children’s Research Institute,         appears on page 13)                                       through The Joe Parkhurst Memorial
  Australia                              • Project One: Establishment of Cell                      Education Fund
• Cynthia Wetmore, MD, PhD, Mayo           Lines, Zenografts and Monoclonal                      • Three live Informed Parent Internet
  Clinic                                   Antibodies                                              Conference Broadcasts
• John Sampson, MD, PhD, Duke              PI, Darell D. Bigner, MD, PhD                         • Publication of new tumor booklet on
  University Medical Center              • Project Two: Serial Analysis of Gene                    Glioma
• Erwin Van Meir, PhD, Emory               Expression of Childhood Brain Tumors                  • Sponsorship of Assoc. of Pediatric
  University                               PI, Hai Yan, MD, PhD                                    Oncology Social Workers Annual
                                                                                                   Meeting Education Day
• Scott M. Belcher, PhD, Cincinnati      • Project Three: Altered Signal
  College of Medicine                      Transduction Pathways and Small
                                           Molecule Inhibitors                                   Peter Steck Memorial Research Award
• Jan M. Van Tornout, MD, MS, The
                                                                                                 & Lecture, MD Anderson Cancer
  Children’s Hospital Los Angeles          PI, Jeremy Rich, MD                                   Center
Clinical Research Project Grants         • Project Four: Gene and Radiotherapy                   • Juan Fueyo, MD, MD Anderson
• Elana Farace, PhD, University of         PI, Michael Zalutsky, PhD                               Cancer Center, Research Award
                                         • Project Five: Definition of Non-                      •Ron DePhino, MD, Harvard Medical
• Maryam Fouladi, MD, St. Jude             AGT/DNA Mismatch Repair                                 School, Lecture Award
  Children’s Research Hospital             Deficiency Mechanisms of Resistance
• Jack M. Su, MD, Baylor College of        to Temozolomide                                       National Cancer Institute Pediatric
  Medicine                                 PI, Henry Friedman, MD                                Brain Tumor Clinical Trials
• Robert Ogg, PhD, St. Jude Children                                                             Consortium
                                         • Tissue Bank Core
  Hospital                                                                                       • Neuro-Imaging Center Grant
                                           PI, Roger McLendon, MD

         ...by Mike Traynor
                                                            Pediatric Brain
    W       e have recently
            returned from the                               Tumor
    Eighth Annual Society for
    Neuro-Oncology conference where the leading
    brain tumor researchers and clinicians met to
    share their most promising laboratory and clinical
                                                            Institiute at Duke
    work. During this conference the Pediatric Brain                                          -Director Darell Bigner, MD, PhD
    Tumor Foundation (PBTF) was recognized for our
    20-year record of providing critical support to the
    research work of the neuro-oncology community
                                                            L    et me start by expressing our gratitude, not only from us but
                                                                 from all our patients, for the opportunity to intensify research
                                                            on pediatric brain tumors.
    in the U.S., Europe and Asia. It was most
                                                               One of the biggest impediments to development of new
    uplifting to see how the PBTF is now recognized
                                                            therapies for childhood brain tumors is the lack of appropriate
    by the international research community as a
                                                            material with which to develop new methods of treatment.
    world leader in brain tumor research. We had
                                                            Specifically, there are only a small number of permanent cell
    several meetings with prominent researchers who
                                                            culture lines and transplantable xenografts of pediatric tumors.
    have asked the PBTF to enter into exciting new
                                                            Our laboratory began a concerted effort 15 years ago to establish
    projects that bode well for future discoveries in
                                                            permanent cell lines from medulloblastoma and our success
    childhood brain tumors.
                                                            enabled other workers worldwide to duplicate our results.
      It is because of you that we have achieved this
                                                                                      Therefore, medulloblastoma represents one
    position of importance in neuro-oncology, and
                                                                                      of the childhood brain tumors in which
    through these collegial relationships, the answer
                                                                                      10-20 permanent cell lines have been
    to childhood brain tumors will come much more
                                                                                      established. Xenografts are transplantable
    rapidly. Now as we enter our third decade of
                                                                                      childhood brain tumors which will grow in
    exploration and education in the field of neuro-
                                                                                      mice which are genetically devoid of an
    oncology, we are filled with great anticipation at
                                                                                      immune system. These mice also have no
    the prospects for finding the cause and cure of
                                                                                      hair and are referred to as nude mice. New
    childhood brain tumors. In this edition of the
                                                                                      treatments are best evaluated in cell
    Helping Hand you will read of exciting new
                                                               Dr. Darell Bigner      culture first and then, secondly, against
    research we are funding and the promise of
                                                                                      growing tumors in nude mice.
    critically needed expansion of knowledge about
                                                               Thus, we are making a concerted effort to establish new cell
    childhood brain tumors.
                                                            lines and xenografts from the Institute’s targeted types of brain
      This year we will host 29 Ride for Kids® events
                                                            tumors – malignant astrocytic tumors, medulloblastoma, pineal
    across America where young brain tumor
                                                            tumors and ependymomas.
    patients, their families, the researchers, clinicians
                                                               This year, we have attempted to develop permanent cell lines
    and the caring motorcycling community will
                                                            from 30 childhood brain tumors from cases here at Duke or from
    come together to celebrate the lives of these
                                                            cases in Professor Manfred Westphal’s laboratory in Hamburg,
    brave children and bring hope into each of their
                                                            Germany. Of the 30 attempted lines, it is too early to state that
                                                            any are established except for one malignant ependymoma line
      There are few experiences in life that mirror
                                                            and one malignant astrocytoma line.
    the heart pounding excitement that fills each of
                                                               For genetic studies which hold the key to identifying the
    us as we ride our motorcycles into those Ride for
                                                            molecules involved in the altered growth control and invasive
    Kids® parking lots at the start of each RFK event.
                                                            process of childhood malignant brain tumors, one must have brain
    One can truly make the analogy that when all
                                                            tumor tissue from which to extract DNA and RNA. Usually, fresh
    those bikes come rolling in, there is a great
                                                            tissue or fresh frozen tissue is necessary to maintain the integrity of
    feeling that the Cavalry has come to the rescue,
                                                            the DNA and RNA for successful extraction. We have established
    to save the young boys and girls who are battling
                                                            a collaborative relationship with Professor Manfred Westphal in
    brain tumors. We hope you will ride with us this
                                                            Hamburg, Germany and Professor David Thomas and his
    year and be a member of our Cavalry for the kids!
                                                            colleagues at the Great Ormond Hospital in London, UK to
                                     -Mike Traynor          receive pediatric brain tumor tissue and short-term cultures.
                                                                                                                 THE HELPING HAND 3

 We have also begun negotiation with Professors Matsutani              defective genes in
 and Sawamura in Japan at Saitama and Sapporo,                         cancer cells with
 respectively and with Professor Ang in Seoul, South Korea             genes that would
 to obtain childhood brain tumor tissue.                               reverse the
    Advances in human genome technology have provided                  malignant process
 technical methods to apply genome-wide methods to                     and correct faulty
 identify the genetic alterations that result in the change of         genes. It is one of
 normal cells to malignant cells. Specifically, sequencing the         the most
 full-length human genome has allowed development of a                 promising
 technique called high resolution digital karyotyping which            concepts in
 is extremely sensitive for identifying potentially all genetic        cancer treatment.            Photo courtesy of Duke University Medical Center

 alterations in cancer cells compared to normal cells. We are          However, from a practical standpoint, gene therapy or
 applying digital karyotyping and serial analysis of gene              transfer of genes into cancer cells is remarkably inefficient
 expression to identify new molecular targets for therapy of           and no one has been able to develop good methods of
 medulloblastoma. It is usually necessary to have DNA                  delivering genes to cancer cells. Dr. Michael Zalutsky is
 libraries prepared from a minimum of a dozen individual               exploring a method to improve gene therapy by using
 medulloblastomas to obtain statistically significant findings         radioactivity in a so-called bystander effect. In practice, the
 with digital karyotyping. The libraries must be prepared              gene target for the radioactive approach will be transfected
 and then sequenced in entirety. Presently, six libraries have         into as many pediatric brain tumor cells as possible. Then,
 been submitted and sequenced and during the next year, an             the subsequent radioactivity will have the ability not only to
 additional six will be generated and sequenced. Since the             kill the cells that were successfully transfected, but because
 human genome data base is continually refined, the data               the radioactivity can reach beyond a single cell, adjacent
 analysis software for this approach has to be updated at              cells that are not successfully transfected will still be killed by
 least on an annual basis. We are in the process of doing              the radioactivity from the successfully transfected cells.
 that.                                                                    One attractive approach in increasing the effectiveness of
    To the best of our knowledge, we are the only group                chemotherapy against childhood brain tumors is to use a drug
 applying digital karyotyping to childhood brain tumors and            that reverses resistance to chemotherapy along with the
 we believe that new molecular targets for therapy                     chemotherapeutic agent. Nevertheless, sometimes when that
 development will be forthcoming from these types of                   is done it increases the effectiveness of the chemotherapeutic
 medulloblastoma analyses.                                             agent to the point that new resistance mechanisms emerge
    One type of new therapies are so-called small molecule             such as mutations in the resistance mechanism being
 inhibitors of signal transduction targets and pathways.               targeted. A way around this difficulty is to target a different
 Signal transduction is the method by which growth signals             pathway in chemotherapeutic resistance, specifically an
 are transmitted to cells telling them either to grow and              enzyme involved in a type of resistance called base excision
 divide or to stop growing. We now have access to small                repair of DNA. Thus, studies are underway evaluating a
 molecular size drugs that act against various growth                  combination of an inhibitor of base excision repair called
 pathways. These include those that react with a family of             INO-1001 combined with the new well tolerated
 cell-surface receptors called the epidermal growth factor             chemotherapeutic agent called Temozolomide or Temodar.
 receptor family and those associated with giving blood                Following these studies, the Pediatric Brain Tumor
 vessel capillaries the signals to grow. We have found that a          Consortium has agreed to undertake a clinical trial of INO-
 combination of two of these small molecule inhibitors are             1001 and Temozolomide in childhood brain tumors.
 much more effective at inhibiting growth of childhood                    A pilot study has been funded to identify new cell-surface
 brain tumors in nude mouse xenografts than individual                 antigen targets on medulloblastomas. These cell-surface
 therapy. Another small molecule inhibitor against a target            antigens will be discovered by dissolving the cell membranes
 that promotes invasiveness, development of blood vessels              of medulloblastoma and analyzing the membrane proteins
 and immunosuppression is being evaluated. This inhibitor              through a new technology called proteomics. Identification
 interferes with the production of transforming growth                 of cell-surface molecular therapy targets can be identified
 factor beta. A second compound can be given orally to                 with this methodology.
                                                 prevent growth of        Drs. Darell Bigner and Carol Wikstrand have successfully
                                                 receptors for blood   made monoclonal antibodies which are proteins that
                                                 vessel growth. We     specifically bind with molecules on tumor cells against
                                                 have on hand          several cell-surface antigens of childhood brain tumors.
                                                 many signal           These include a molecule in the multidrug resistance family
                                                 transduction          called MRP3 and another one called glycoprotein
                                                 inhibitors to be      neuromedin B. These monoclonal antibodies are presently
                                                 evaluated in the      being evaluated for their ability to kill childhood brain
                                                 year to come.         tumors growing as xenografts in athymic mice.
                                                   Gene therapy is        An improvement in making monoclonal antibodies has
Photo courtesy of Duke University Medical Center replacing the                                                               continued on page 5

PBTF Partners with the Society for Neuro-Oncology
S   ince 1984, the Ride for Kids®
    program and the Pediatric Brain
Tumor Foundation (PBTF) have been
                                            Its goal is to bring together the
                                            brightest minds in the above fields to
                                            share research findings to bring about a
                                                                                          and fundraisers continue to attend
                                                                                          funerals of children who have not been
                                                                                          able to overcome their brain tumors.
raising funds to find the cause and cure    greater understanding of cancers              SNO provides a crucial piece of the
of childhood brain tumors. Now              involving the central nervous system.         puzzle as we search for the cause and
entering its third decade of research          From its inception, SNO’s leadership       cure of childhood brain tumors.”
funding, the Foundation has stepped up      core has looked to PBTF for funding             PBTF funds an annual award for basic
to become the largest source of non-        and guidance. “SNO allows the world’s         research in the field of pediatric neuro-
governmental funding for pediatric          best to come together and share               oncology. This year’s award was given
brain tumor research in the world. In its   information and resources rather than         during the Eighth Annual SNO
quest to fast forward childhood brain       trying to compete for knowledge,” Mike        Scientific Meeting held in November
tumor research, the PBTF has chosen         Traynor, PBTF president commented.            2003. Erik J. Uhlmann, MD, was the
to partner with the Society for Neuro-      In 1998, the Foundation provided a            recipient of the award for his work on
Oncology (SNO) as the Society’s first       founding grant to SNO to establish the        the Rap1 INHIBITION OF MAPK
platinum level sponsor. SNO is a multi-     international medical journal Neuro-          SIGNALING ATTENUATES B8 RAS
disciplinary organization comprised of      Oncology, which is edited by Darell           TRANSGENIC ASTROCYTOMA
the leading researchers and doctors         Bigner, MD, PhD. “PBTF sees both              FORMATION IN VIVO.
from the fields of neuro-oncology,          sides of the coin,” Traynor said. “While        For more information about the
epidemiology, neurosurgery, pathology,      our college scholarship program for           Society for Neuro-Oncology, please
pediatrics, psychology, radiology,          young brain tumor survivors grows by          visit their website at www.soc-neuro-
radiation oncology, and basic science.      leaps and bounds, our staff, volunteers       onc.org.

            Erwin G. Van Meir, PhD, Emory University                                    Jan M. Van Tornout, MD, MS,
                                                                                       Children’s Hospital of Los Angeles
    “Anti-Tumor Effects of ARF Tumor Suppressor
      Gene on Human Glioblastoma Formation”                                             “Genetic Susceptibility in
                                                                                         Pediatric Brain Cancer”
G     liomas are the most malignant primary
      brain tumors. In the past 10 years we
have learned a lot about the genetic                                          S   poradic pediatric malignant brain tumors
                                                                                  (PMBT) are the leading cause of cancer
mechanisms that can lead to the formation of                                  deaths among children, yet the etiology of
these tumors. Specifically, we now know that                                  PMBT remains unknown. More than 35% of all
two types of genes can be altered in the                                      childhood brain tumors are diagnosed before five
formation of these and other brain tumors:                                    years of age, suggesting that the causes of PMBT
oncogenes and tumor suppressor genes. It is                                   occur early in the development, possibly before
very important to identify the unique                                         birth. Also, brain cancer between two siblings
combination of genes that are altered in the                                  of the same family is extremely rare. Because of
formation of each type of brain tumor and to        Erwin G. Van Meir, PhD    this, our focus of research is on important
understand what specific growth advantages                                    polymorphic genes that may increase a child’s
they confer to tumor cells. In this proposal we                               risk of developing a PMBT. For these genes there
plan to analyze the biological role of the INK4A/ARF locus alteration on      is strong data supporting their involvement in
chromosome 9 in malignant gliomas. In a high proportion of malignant          key pathways in normal brain and/or PMBT
pediatric and adult glial tumors, homozygous deletion of the                  development, and they are different between the
INK4A/ARF locus causes the loss of two tumor suppressor genes: INK4A          siblings of the same family. We will enroll
and ARF. INK4A encodes p16, a protein involved in cell cycle                  children with medulloblastoma and gliomas,
regulation while ARF encodes p14ARF, a protein that can activate the          their parents and siblings to compare their
p53 tumor suppressor. This co-deletion complicates our understanding of       genotypes with the case genotype. This case-
the individual contribution of the two genes in tumor suppression. How        parental control design provides matching on
genetic inactivation of ARF, independently of INK4A, activates the            ethnicity and allows us to study the main effect
malignant process in gliomas is poorly understood. The aim of this            of the case genotype, the interplay of multiple
project is to determine whether p14ARF functions as a tumor suppressor        genes, and the gene x environmental
in glioma and to determine whether it does so by being anti-                  interactions vis a vis the risk of disease. This
proliferative, anti-apoptotic or anti-angiogenic and to examine by which      research will allow us to identify critical genes
mechanism. Understanding the functional role of ARF in the malignant          whose polymorphisms can lead to brain cancer.
progression of human gliomas is important to define its mechanism of          One can then target these genes for molecular
action and evaluate its potential as a therapeutic agent.                     intervention.
                                                                                                       THE HELPING HAND 5

                       Scott M. Belcher, PhD,                                     Research Update...
             University of Cincinnati College of Medicine                         (continued from page 3)
           “The Role of Hormones in Regulating                                    come from genetic manipulation of mice. If
              Medulloblastoma Cell Growth”                                        mice have the ability to make a protein
                                                                                  destroyed by genetic technology, the immune
O     ur laboratory has discovered that the normal
      immature nerve cells that give rise to
medulloblastomas, a very common type of early
                                                                                  system of that mouse is capable of better
                                                                                  recognizing foreign substances and being used
childhood brain tumor, can respond to estrogen.                                   to make monoclonal antibodies. This
This response is very similar to responses that                                   methodology is being applied to several
occur in breast cancer cells. Because estrogen and                                additional cell-surface molecular targets which
other hormones regulate the normal development                                    are composed of sugar structures.
of the brain, we propose that growth of these                                       All of the above difficult and laborious
brain tumor cells, like growth of breast cancer                                   studies are being carried
                                                                                  out to develop new and

                                                                                                                                    Photo courtesy of Duke University Medical Center
cells and normally developing nerve cells, is
sensitive to sex hormones. In different types of                                  less toxic therapies for
medulloblastoma cells we will determine the                                       childhood brain tumors.
ability of different hormones and hormone-action                                  The enthusiasm and
                                                       Scott M. Belcher, PhD      cooperation of our
blocking chemotherapy drugs to stimulate known
hormone actions and to determine the ability of                                   investigators in the
these agents to block tumor cell growth. The recognition of the role of           Pediatric Brain Tumor
hormones in breast cancer and the development of therapeutic strategies           Foundation Institute at
to inhibit hormone actions has contributed greatly to a dramatic increase         Duke is excellent and the
in cure rate for breast cancer. Determining the effects of hormones and           long-range funding is
chemotherapy drugs that specifically block hormone-dependent brain                allowing pursuit of difficult
tumor growth may lead to new treatments for medulloblastoma.                      projects which will have a
                                                                                  high payoff if successful.

      Joni’s Hope Golf Tourney Raises $10,000
              for Foundation Research
T     oday three-year-old Joni Thompson is a happy, healthy
      girl, full of energy and laughter. It’s hard to believe that
less than two years ago she was diagnosed with a
                                                                       The tournament
                                                                     took place at
                                                                     Mountain Harbor Golf
hemangiopericytoma brain tumor that required four                    Course, and Joni stole
                                   surgeries. During her             the show at the beginning of
                                   struggles with her brain          the tournament. Bobbie Thompson
                                   tumor, the Foundation             (Joni’s mom) and Cameron Forrest, the golf pro at Mountain
                                   provided much support and         Harbor, organized and conducted the outing. The 27-hole
                                   advice, and the Thompsons         tournament included 78 golfers. Mountain Harbor donated
                                   have not forgotten the help.      their facilities for the event. Afterwards, the players joined
                                      Last October, for the          others for a delicious dinner provided by Country Cottage
                                   second time, they held the        Restaurant held at Shiloh Stables. Dozens of volunteers
                                   Joni’s Hope Project Golf          assured that the event ran smoothly. The event raised
                                   Tournament in Hayesville,         $10,000 for PBTF’s Research and Family Support programs.
                                    NC. The event included             “I meet so many wonderful people doing this tournament,
                                    many corporate sponsors, a       and I’m grateful for all the support and donations from
 Little Joni draws raffle tickets   dinner, a raffle, and a silent   everyone,” said Bobbie Thompson. “Raising money with this
   in a most unique fashion.        auction.                         tournament is my way of giving back.”

                                                                      Stories of Hope from Doctors and Patients

    I  n early1998, Michelle Higa was a
       14-year-old freshman in high
    school—an exemplary student, and
                                                                                          During her treatments, she arranged
                                                                                        to keep up with her schooling by
                                                                                        independent study. She got help from
    an excellent swimmer, competing                                                     her teachers with chemistry and
    on her high school swim team. She                                                   algebra, and worked with a tutor. Her
    noticed that she wasn’t quite herself                                               determination and positive attitude
    as winter turned to spring. Her                                                     prevailed. She kept up with her class.
    grades began to drop and she                                                          Forced to take a year off from
    developed occasional nagging                                                        competitive swimming, she returned
    headaches.                                                                          to that sport after her radiation and
       “My parents were pushing me,                                                     chemo. She was able to get to that big
    thinking I just wasn’t paying                                                       swim meet a year later – she was the
    attention to school, suggesting that                                                only person in her area to qualify, and
                                              Michelle, a brain tumor survivor, with    she completed the competition
    my swimming activities and my
                                                Joe Arthur at the 2003 Torrance
    social life were getting in the way of                                              successfully.
                                                          Ride for Kids®
    school work,” she explained.                                                          Michelle graduated from high
      She went to the doctor several                                                    school in the top 10% of her class.
    times, and was diagnosed with mononucleosis, a                  She also participated in leadership activities, was
    diagnosis she now believes was incorrect. Her                   honored to be the captain of her swim team, and was
    headaches got worse, as did the vomiting; she lived on          voted most valuable player.
    over the counter headache remedies for a month or so,              Now age 20, Michelle is a junior at University of
    with no relief. She continued her competitive                   California-Irvine. She is healthy, active and most
    swimming, preparing herself for a huge regional swim            grateful every day of her life. She is a psychology and
    meet in May 1998.                                               social behavior major, working toward a degree in
      But on May 10, her world turned upside down. She              psychology.
    had a seizure that day and recalls having a horrible               “I want to be a psychologist and work with social
    pounding headache. She was rushed to the hospital,              workers to create a program to help parents and siblings
    where doctors ordered a CAT scan, revealing a tennis-           deal with the stress associated with living with a child
    ball size PNET tumor on her brain. She had surgery six          who has a brain tumor. I know from personal experience
    hours later.                                                    that we need our parents and siblings to be strong and to
      She remembers waking up before the surgery with a             maintain a positive attitude,” she said. “It’s absolutely
    tube down her throat. Frightened and confused, she did          critical.”
    not know what was happening. Her mom handed her                    Michelle is the recipient of a PBTF Scholarship,
    paper and pen, and she wrote that she had to get to the         something she is profoundly grateful to receive,
    swim meet the next day. Then her pain medication                especially with skyrocketing tuition costs. She says a
    kicked in, and she woke the next day, bandaged and              social worker at the hospital where she received
    unable to move, to learn a tumor had been removed               treatments told her about the Foundation’s scholarship
    from her brain.                                                 program and the Ride for Kids® in Torrance, CA.
      Doctors believed they had successfully removed the               In 2002 she attended her first Ride for Kids® event
    entire tumor, but did not want to take any chances, so          which proved to be an incredible experience for her.
    for the next year Michelle received radiation and               “We were invited to attend the Torrance ride, and I
    chemotherapy. These treatments kept her from going              didn’t know anything about motorcycles. It was weird
    back to school that year, but Michelle was determined           seeing all those motorcycles lined up, and all those
    to keep up with her class.                                      motorcyclists smiling at me. I just couldn’t believe all
      “I just didn’t want having cancer, a brain tumor, to          those people were raising money for me. It’s one thing to
    stop me,” she said quietly.                                                                             continued on next page
                                                                                               THE HELPING HAND 7

hear about it, but it was an entirely different thing to see it.               Heroes • Michelle Higa
These people were just wonderful.”
  Riding in the 2002 event was a first for Michelle – she had      You are the people that we most admire,
never ridden a motorcycle, saying it had been forbidden by her        The type of people that we would like to be.
parents. “It was just awesome, sort of like my own personal        You are our heroes, unselfish and pure
parade, exciting and fun,” she recalled.                              And because of all of you, we are here today
  At the Celebration of Life program after the event, Michelle     Touching people’s lives as you have touched ours
addressed the crowd, but felt she didn’t really know what to          You bring hope, love, and support in our
say. She returned to the 2003 event, prepared this time to fully      darkest hours.
express her gratitude with a poem she wrote entitled Heroes.
                                                                   Today we come together, though soon we must part
  Committed to the Foundation’s mission of finding the cause
                                                                      A little piece of you remains in our hearts.
and cure of childhood brain tumors, Michelle is most excited
about the Pediatric Brain Tumor Foundation Institute at            Held with so much emotion it is hard to express
Duke. “They are doing so much to help get rid of brain                Our life long gratitude for all that you have done
tumors, and to save another child from having to receive           You will be part of everything we do;
chemo and radiation. I’d do anything to help a child avoid            When we need strength, we will look inside for you.
that, and I hope they can develop a treatment that’s not so        For you are our heroes, and you bring us light
horrible,” she said.                                                  Visions of our future, looking so bright
  Michelle wants other children with brain tumors to know
her thoughts. “Just know it’s a temporary setback, and that you    Thank you for giving us the opportunity to shine.
can overcome it. It’s an obstacle to overcome, and the things         You are in all of our hearts, as you are in mine.
you gain can’t be taught.”                                            Thank you.

                                                                                  Juston, a brain tumor survivor,
                                                                                 enjoys life to the fullest. Parents,
                                                                                   please send in your photos of
                                                                                  young brain tumor survivors for
                                                                                   possible use in future Helping
                                                                                           Hand editions.

                        Juston was featured in a recent
                       Honda ad for the Ride for Kids®.

   The Pediatric Brain Tumor Foundation’s (PBTF) staff and volunteers spend
considerable time advocating for patients and their families by raising
awareness of childhood brain tumors throughout the world. These efforts help       Informed Parent Internet
alert families and the medical community to the need for early detection of        Conference Focuses on
brain tumors. The Foundation’s advocacy efforts do not just focus only on the
disease of childhood brain tumors. The staff also works to highlight larger        Palliative Care
issues such as survivorship, pediatric palliative care, pediatric oncology, drug
development and the empowerment of patient families.
   Throughout the year, Foundation staff members meet with numerous cancer
                                                                                   T    he December
                                                                                        2003 Informed
                                                                                   Parent Internet
advocacy groups, Congressional representatives, and medical and social work        Conference
professionals. Dianne Traynor, Director of Research Funding and Advocacy for       addressed the
the Foundation, completed her term as the co-chair for the Alliance for            subject of
Childhood Cancer in June. PBTF helped found this national group of 21              combining curative
advocacy/nonprofit organizations and                                               and palliative care
professional organizations focusing on issues                                      for children with
related to children with cancer.                                                   brain tumors.
   To help promote the development of the                                          Joanne Hilden,           Informed Parent
neuro-oncology field, the Foundation funds                                         MD, author of            Internet Conference
national and international brain tumor                                             Shelter from the         presenter Joanne
conferences, including the 2003 15th                                               Storm led the            Hilden, MD
International Conference on Brain Tumor                                            conference. She
Research and Therapy in Sorrento, Italy.                                           answered many questions and discussed
                                                                                   how to talk with children about their
                                                                                   illness, how to get help with the decision-
                                                                                   making process regardless of the prognosis,
     Be sure to look for the new Pediatric Brain
       Tumor Foundation General Awareness
                                                                                   and how to manage symptoms.
     Campaign in the February 2004 editions of                                        Dr. Hilden is involved in clinical care
          Oprah and Good Housekeeping                                              and teaching medical trainees about
                      magazines.                                                   palliative care. She is the chair of the
                                                                                   Department of Pediatric
                                                                                   Hematology/Oncology, and medical
                                                                                   director of Pediatric Palliative Care and
                                                                                   the Children’s Oncology Group (COG)
 Other PBTF advocacy efforts include:                                              Responsible Investigator at the Children’s
                                                                                   Hospital in Cleveland, OH. Dr. Hilden
     • Participation in the NCI/NINDS Brain Tumor program review group             was appointed to the Institute of Medicine
                                                                                   Committee and helped prepare a report,
     • Member of the NCI Office of Liaison Activity’s “Cancer Advocates            When Children Die: Improving Palliative and
       for Research and Related Activities” (CARRA)                                End-of-Life Care for Children and Their
                                                                                   Families, published in 2002. She founded
     • Moderator of Congressional Briefing on childhood cancer
                                                                                   and co-chairs the COG Subcommittee on
     • Panel member for Food and Drug Administration workshop entitled             Palliative Care. She is also certified by the
       Pediatric Oncology Drug Development                                         American Board of Hospice and Palliative
     • Sponsor of National Brain Tumor Action Week                                    Copies of Dr. Hilden’s book, Shelter from
     • Sponsor of Childhood Cancer Awareness Days                                  the Storm may also be obtained from the
                                                                                   Foundation, at no charge, by calling (800)
     • Assistance with passage of “Benign Brain Tumor Cancer Registries            253-6530 and speaking with the
       Amendment Act” into federal law by funding activities of the                Foundation’s Family Support Coordinator,
       Central Brain Tumor Registry of the United States                           Bobbie Duffy.
                                                                                                  THE HELPING HAND 9

           Win a Norton
          952 Commando!
C     ycle World magazine and the Pediatric
      Brain Tumor Foundation (PBTF)
announce the fourth edition of the popular
                                                     Pediatric Brain Tumor
                                                     Foundation, ATTN: Norton
                                                     Motorcycle Raffle, 302
Cycle World/Ride for Kids® motorcycle raffle.        Ridgefield Court, Asheville, NC
The winner of this year’s grand prize – a            28806. Please be sure to include                Cycle World
Norton 952 Commando donated by Kenny                 your mailing address and phone                  International
Dreer and his team at Norton Motorsports –           number with the funds.                         Motorcycle Show
will be selected from entries received during           Tickets may be purchased by phone via          Schedule
the 13 Cycle World International Motorcycle          credit card. Please call (800) 253-6530
Shows held in 2003-2004. The Norton 952              and ask for the Accounting Supervisor. A              Chicago
Commando will be on display in a designated          minimum purchase of $20.00 for five (5)              Feb 6-8, 2004
Ride for Kids® area in the Cycle World booth         tickets is required for phone orders.
at the International Motorcycle Shows.                  The drawing for the winner will be                  Detroit
Prices are $5 for one (1) ticket, and five (5)       held at 12 noon EDT, on May 3, 2004 at              Feb 20-22, 2004
tickets may be purchased for $20.                    the PBTF headquarters in Asheville, NC.               Daytona
   If you are unable to attend one of the Cycle      You need not be present to win. Proceeds          (Part of Bike Week)
World International Motorcycle Shows, you            benefit the research and family support              Mar 3-7, 2004
are still eligible to purchase tickets.              programs of the PBTF.
   Tickets may be obtained by mail from the             For more information visit                       Minneapolis
PBTF. Please make checks payable to the              www.rideforkids.org or                             Mar 26-28, 2004
Pediatric Brain Tumor Foundation. Send to:           www.nortonmotorcycles.com.

                                          New Ride for Kids® Public Service
                                             Announcements Unveiled
                                                                  announcement, Marshall sits on a motorcycle listening
                                    A     new 30-second
                                          television public
                                     service announcement
                                                                  to Dave Despain talk about his involvement with Ride
                                                                  for Kids®, and adds his endorsement at the end, saying,
                                     (PSA) featuring brain        “Let’s ride!”
                                     tumor survivor Marshall        The Foundation also has 29 new public service
                                     Fine is now being aired      announcement radio spots that will air in Ride for
                                     across the nation. The       Kids® cities in 2004. These spots were produced at
                                     announcement was shot        WXOL/WISE in Asheville, NC, who donated their
       Marshall Fine...the next      and produced at the          time and studio for this cause. Special thanks to Kathy
        big name in Hollywood!       Speed Channel                Scott, a reporter at WBTV in Charlotte and budding
                                     headquarters in              motorcyclist, for donating her melodic voice to produce
    Charlotte, NC. Speed Channel Executive Producer Dan           the radio announcements. Kathy was previously a
    Parisi made certain everything ran smoothly. Speed            morning anchor at WLOS-TV in Asheville, NC,
    Channel and Parisi donated their facility, time and           where she became involved in the Ride for Kids®
    talent to create this spot. Dave Despain, host of Speed       events. “The Foundation is such an inspirational group
    Channel’s Wind Tunnel and the long-time voice of              of people. I met Mike Traynor, the co-founder, about
    motorcycling, lent his voice and acting talents to appear     two years ago, and quickly learned you just can’t say no
    in the announcement. The Foundation sincerely                 to him—he motivates people with his passion. I was
    appreciates these contributions.                              happy to help them with these announcements, and I
      Marshall Fine, a five-year-old brain tumor survivor         look forward to doing anything they need help with in
    from Atlanta, GA, was the star of the PSA. In the             the future,” she said.

Ride for Kids® Task Force Leaders Celebrate
 and Learn at 20th Anniversary Conference
                                                                                          seminar presented by AMA’s Eddie
A     n exciting new venue and an
      expanded three-day training
meeting marked the annual Ride for
                                                                                            Later that evening, the Task Force
Kids® Task Force Leaders planning                                                         Leaders were joined by members of the
session held this year in Redondo                                                         motorcycling media and aftermarket,
Beach, CA. Nearly 100 devoted                                                             along with key managers of Honda, for
volunteer leaders gathered with                                                           a special reception and 20th
patient families, researchers and                                                         anniversary celebration dinner. Mike
Foundation staff, November 5-9,                                                              Traynor announced that the Ride for
2003, to celebrate 20 years                                                                   Kids® raised a record $3.4 million
of Ride for Kids® events.                                                                       from 26 events in 2003 and $23
The meeting took place                                                                           million since the start of the
in California to honor                                                                           program in 1984.
American Honda Motor                                                                                Several guest speakers also
Company - the Ride for                                                                            addressed the crowd. Paul Krause
Kids® presenting sponsor                                                                          spoke about his experience as a
since 1991. The conference                                                                       parent of a child with a brain
also highlighted the tireless                                                                   tumor. His son, Brandon Krause, is
support of the motorcycling                                                                    a brain tumor survivor and is
media and aftermarket industry,                                                               featured in the Foundation’s new
many of which are based in                                                                 General Awareness campaign. Jeremy
California.                                                                               Rich, MD, Duke University Medical
  Following a welcome                                                                                    Center, described
dinner on November 5,                                                                                    significant childhood
the attendees began the                                                                                  brain tumor research
session bright and early                                                                                 advances to the audience.
on Thursday, November                                                                                    Michelle Higa, a brain
6 with opening remarks                                                                                   tumor survivor and PBTF
by PBTF President Mike Traynor and        included the motorcycle race team               scholarship recipient, read a poem she
Charlie Keller, manager of the Honda      shop, the parts center, and the                 wrote to thank motorcyclists for their
Rider’s Club of America. Then they        technical training center. They listened        support. Charlie Keller thanked the
boarded buses, generously provided by     attentively as Gary Kessler, vice               volunteer leaders for their efforts and
Torrance Transit (see related story on    president of Human Resources for                Larry Little, publisher of Cycle World
this page), to visit the American         American Honda, detailed Honda’s                magazine and chairman, Motorcycle
Honda campus in Torrance. At              philanthropy programs. After lunch,             Industry Council, encouraged the
American Honda’s headquarters, they       attendees participated in an informative        media and motorcycle industry to
toured the corporate facility, which      American Motorcycle Association                 expand their support. Rob Rasor,

                                 The Ride for Kids® Task Force Leaders in front of the Torrance Transit bus during the TFL meeting
                                                                                                     THE HELPING HAND 11

president of the American Motorcycle       • Kathy Riley of Granada
Association, stated that the Ride for        Hills, California, who
Kids® program is the largest AMA-            shared her family’s
sanctioned charity in the U.S.               experience with their son
  On Friday and Saturday, Foundation         Peter, a brain tumor
staff members conducted training             survivor. Rachel, Peter’s
sessions and gave updates on Family          sister, also addressed the
Support and Research and Advocacy            group.
                                           • Inspirational moments –
Of special interest were:                    personal reflections from
                                             brain tumor survivors,
• Darell Bigner, MD, PhD, Duke               read by Task Force
  University Medical Center and              Leaders.
  director, Pediatric Brain Tumor
  Foundation Institute (PBTFI) at          • Discussion sessions with
  Duke, who presented an update of           panels by Task Force               Silvio and Jessie Carrara with Marysville, OH
  the new research underway at the           Leaders.                                Task Force Leader Lou Ann McKeen
  PBTFI.                                      Joe Bentz, a Task Force
                                            Leader from Madison, Wisconsin,            their family were honored as the top
                                                       commented, “I read a letter     fundraisers in 2003. The Whites raised
                                                       from a young man who had        $51,500 to support Foundation research
                                                       cancer, and he said it had      programs in memory of their daughter
                                                       been a blessing of sorts        Nikki, who succumbed to her brain
                                                       because he could face           tumor in 1998. This year’s dinner also
                                                       anything now. That was          included a number of special guests
                                                       such an inspiration to me,      from American Honda Motor Company
                                                       and I was glad to get to read   including Mr. Kondo, president and
                                                       the letter and participate in   chief operating officer; Mr. Arima,
                                                       the ‘inspirational moments.’    assistant to the president, Motorcycle
                                                       I thought this addition to      Division; Ray Blank, vice president,
                                                       the meeting was a great         Motorcycle Division; and Silvio
                                                       idea, and reading these hit     Carrara, vice president, Motorcycle
                                                       home for all of us.”            Service. PBTF Board members Wayne
                                                          On Saturday night, Scott     Toyota and Chris Hoefflin also
     Sharon Richens with Martin and Emily Czysz        and Mary Jo White and           attended.
         at American Honda Motor Company

   Torrance Transit Supports Task Force Leaders Meeting
      W      hen the Foundation decided to host its 20th
             anniversary Task Force Leaders meeting in
      Redondo Beach, CA, there were many complex
                                                                    secure the services of the city buses.
                                                                      “Through the help of a friend who was a former city
                                                                    official, we were able to provide the buses at no cost
      logistics. One of those was figuring out how to               for this meeting,” explained Browne. “Each year the
      transport nearly 100 attendees back and forth from            city of Torrance has become more and more involved
      the meeting center to American Honda’s campus and             with the Ride for Kids®, and this was one more way
      other venues. Torrance Transit provided a great               they could help and enhance their community
      solution! They contributed three 40-foot buses and            outreach efforts.”
      eight drivers to move the crowd between the hotel               Aram Chaparyan of Torrance Transit worked with
      and American Honda headquarters and between the               the Foundation to provide this generous service. “The
      hotel and a popular restaurant for Friday night’s             Pediatric Brain Tumor Foundation partners with the
      dinner.                                                       Torrance PD and the travel was within the City. We
        Timm Browne, Torrance Task Force Leader and                 were able to accommodate the request based on our
      Chief of Police for Palos Verdes Estates, CA, helped          available manpower,” he said.

Sacramento Ride for Kids® Brimming Over
with Brain Tumor Survivors
A    year of hard work certainly paid off for Sacramento, CA
     fundraisers and volunteers as they celebrated raising
$171,797 at the 11th Annual Sacramento Ride for Kids®.
Some 825 motorcyclists, volunteers, fundraisers and patient
families attended the event. Congratulations to Task Force
Leaders Bill and Sue Neander and Jack and Lillian Cushman
and their dedicated team of volunteers.                                  Zack and a friend enjoy the 2003 St. Louis Ride for Kids®.
  A Ride for Kids® record-setting 23 brain tumor survivors
sat on stage at the Celebration of Life program after the
Ride. Motorcyclists listened as these survivors talked about
                                                                      St. Louis Ride for Kids® Raises $66,932
their lives. Dr. Mike Edwards, a neurosurgeon and neuro-              for Pediatric Brain Tumor Research
oncologist, participated in the Ride on his Honda RC51
motorcycle. “We love
these children like
                                                                     C     risp fall weather made for a perfect motorcycle ride on
                                                                           September 21, and 500 people enjoyed the weather and
                                                                      the ride at the 2nd Annual St. Louis Ride for Kids®. The
family and we are                                                     event raised $66,932 for the Pediatric Brain Tumor
blessed by the loving                                                 Foundation. St. Louis Ride for Kids® Task Force Leaders
family of motorcyclists                                               Guy and Margie Miller and Greg and Mary Hoette, and all
gathered here today,”                                                 the volunteers did an outstanding job at this successful
said Dr. Edwards. Anne,                                               event.
the mother of four-year-                                                 At the Celebration of Life program after the ride, Sedric,
old Matthew,                                                          whose 14-year-old daughter Ashley has a brain tumor,
commented, “It is so                                                  shared his delight with the motorcyclists, telling them how
unbelievably                                                          comforting it was to come to and be a part of an event like
overwhelming to be here                                               Ride for Kids®. Carol Macpherson, a clinical research
today, to see so much                                                 coordinator of neurosurgery and neuroresearch also spoke to
caring and feel so much                                               the crowd, saying, “It is so good to be part of this event
love for children like        Matthew is ready to ride during the     because your goal is the same goal I have—finding a way to
our son Matthew.”                Sacramento Ride for Kids®.           end brain tumors.”

                                                         Dunnellon Ride for Kids® Raises
                                                         Record-Breaking $90,001
                                                         S   ome 450 motorcyclists enjoyed a beautiful ride through Florida’s
                                                             scenic Gulf Coast horse country on November 2 at the 4th Annual
                                                         Dunnellon, FL Ride for Kids®, raising a record $90,001 to help support
                                                         the PBTF’s research programs. Congratulations to Task Force Leader
                                                         Sharon Richens and her wonderful volunteer team for a successful Ride.
                                                           At the Celebration of Life after the Ride, Dunnellon Mayor John
                                                         Taylor read a special proclamation highlighting the Ride for Kids® 20-
                                                         year history and the Dunnellon Ride for Kids’® last four years. Kathy,
                                                         mother of 17-year-old brain tumor survivor Kimberly, described what it
                                                         was like to have a child with a brain tumor. “We appreciate you guys so
                                                         much,” Kathy said. “We feel as if you are a part of our family. It has been
     Kimberly gets ready to ride in the 4th Annual       a few years since I last rode a motorcycle and, as a mom, I think I just
             Dunnellon Ride for Kids®.                   reached another level of coolness!”
                                                                                                    THE HELPING HAND 13

Phoenix Ride for Kids®                                                                 $71,583 Raised at
Contributes $165,513                                                                   2nd Annual Birmingham
to Foundation Programs                                                                 Ride for Kids®

T    emperatures exceeding 100 degrees did
     not stop 575 dedicated motorcyclists
from participating in the 7th Annual
                                                                                       S   eptember 28 was a great day for
                                                                                           Birmingham, AL area motorcyclists
                                                                                       and children with brain tumors. Some
Phoenix Ride for Kids®. The October 19th                                               400 motorcyclists, volunteers, and
event raised $165,513 to support the PBTF.                                             patient families came together for the
Congratulations to Phoenix Task Force                                                  2nd Annual Birmingham, Alabama
Leaders Nick and Ginny Hoppner, Dave               Mike Whitaker and Brian enjoy the   Ride for Kids®, raising $71,583 for
and Edie Hewitt and their super team of           7th Annual Phoenix Ride for Kids®.   Foundation research efforts.
volunteers for this successful event.                                                  Congratulations to Task Force Leaders
   During the Celebration of Life program after the Ride, participants listened to     Jimmy and Gail Horn and Jim and
ten brain tumor survivors talk about what it is like to have a brain tumor. Lanette    Barbara Rogers and their volunteers for
and her friend Christina both had brain tumors. Lanette commented, “Christina          a very successful Ride!
and I are ‘brain-gels.’ Her tumor was on her left side and my tumor was on the            At the Celebration of Life program
right side. Angels need two wings, and together we have the two sides needed. So,      after the Ride, the riders listened to
we make each other complete, and together we are a brain-gel!” Dr. Michael             patient families discuss caring for a
Berens, PhD, a research scientist, told the riders about the latest advances in        child with a brain tumor. Byrom Fewell
childhood brain tumor research.                                                        is a parent who lost his daughter Emily
   Scott and Mary Jo White, the Top Individual fundraisers, lost their daughter        to a brain tumor. He commented,
Nikki to a brain tumor and have been dedicated fundraisers for many years. The         “There is no communication to express
PBTF has named a college scholarship in Nikki’s memory.                                what families go through when their
                                                                                       child has a brain tumor.” The riders
                                                                                       also learned about the latest advances
                           Louisiana Ride for Kids®                                    in childhood brain tumor research from
                           Celebrates Inaugural Ride                                   Dr. Alyssa Reddy and Dr. Yancey
                           T   he 1st Annual Louisiana Ride for Kids® took place
                               on October 19th in Baton Rouge, LA with 200
                           motorcyclists, fundraisers, participants and volunteers.
                           This first annual event raised $18,307 to support the
                           Foundation’s research and family support programs.
                           Thanks to Louisiana Task Force Leaders Bullet and
                           Nancy McGee, Trina Gilford and their team of
                           volunteers for their hard work and dedication.
Six-year-old Garrett helps
                             Gene and Sara Brady of Pasadena, TX came all the
 Keith Knapp kick-off the  way to Baton Rouge to support this first Ride. “Louisiana
  1st Annual Louisiana     motorcyclists have been supporting the Houston, TX
     Ride for Kids®.       Ride for many years and we just wanted to return the
                           favor,” said Gene. At the Celebration of Life,
Foundation President Mike Traynor asked six-year-old brain tumor survivor Garrett      Michael, a Ride for Kids® star, and a friend
where he got his adorable freckles. Garrett responded, “The Internet!”                  at the 2003 Birmingham Ride for Kids®

                                                   First Annual Dallas/Ft. Worth Ride for Kids®
                                                   a Great Inaugural Ride
                                                   O    n October 12, 225 motorcyclists and friends gathered to kick off the
                                                        first annual Dallas/Fort Worth Ride for Kids® in Benbrook, TX. The
                                                   Ride raised $23,719 for childhood brain tumor research. Special thanks to
                                                   Dallas/Fort Worth Task Force Leaders Mike Culpepper, Andy & Jan Stasiak,
                                                   and all the volunteers for their hard work.
                                                      After the Ride, the motorcyclists gathered at Glen Rose Intermediate
                                                   School in Glen Rose, Texas for the Celebration of Life program. During the
                                                   program, Lois Burns, a Ride for Kids® fundraiser, commented, “We do this
                                                   because we have healthy grandchildren and we want to help those families
    Allen Hughes and Elise at the 1st Annual       and children who are less fortunate.”
        Dallas/Fort Worth Ride for Kids®

 Top Fundraisers and Motorcycle Winners...for Sept. – Nov. 2003
    Top Individuals                   Top Club/Chapter                     Top Dealer/Shop                Honda Motorcycle Winner

St. Louis, MO:                                                             Niehaus Cycle Sales
                                       Road Riders for Jesus                                                       Guy Miller
  Carl & Sally Crackel                                                        Litchfield, IL
                                            $14,380                              $24,551                           O’Fallon, IL
Birmingham, AL:                                                                Smith Brothers
                                Southern Cruisers of Birmingham                                                     Gail Horn
     Byrom Fewell                                                               Oneonta, AL
                                           $46,166                                $38,609                        Birmingham, AL

Dallas/Ft. Worth, TX:              Barger’s All Sport Red Riders            Barger’s All Sports                    Bill Sinclair
     Russell Locke                           Waco, TX                           Waco, TX
                                               $4,090                            $4,105                           Glen Rose, TX
Louisiana:                            GWRRA – Louisiana                    G.N. Gonzales Honda
                                         Chapter A                           Baton Rouge, LA                      Bullet McGee
  Vic & Adele Barnett                                                                                             Crowley, LA
        $3,015                            $3,742                                  $3,888

Sacramento, CA:                          Redwood Riders                           Wing Nut                         Paul Morey
Charles & Phyllis Horner                    $16,185                               $20,035                         Yuba City, CA
Phoenix, AZ:                            Nikki White Club                       Western Honda                      Mary Jo White
 Scott & Mary Jo White                                                         Scottsdale, AZ
                                            $52,311                                                                Gilbert, AZ
        $51,500                                                                   $53,465

Dunnellon, FL:                       Hap’s Gulf Coast Riders
                                                                            Hap’s Motorcycles                    Carol Thompson
 Skip & Renee Halback                                                         Sarasota, FL
                                            $22,658                              $28,366                         Lake Wales, FL

                                                                     Event Schedule
  Southern California Dual Sport                Indianapolis, IN Ride for Kids®              Puget Sound (WA) Ride for Kids®
  Ride for Kids®                                  July 11                                      September 12
    March 21                                    Chicagoland (IL) Ride for Kids®              Columbia, MD Ride for Kids®
  Houston, TX Ride for Kids®                      July 18                                      September 19
   April 25                                     Utica, NY Ride for Kids®                     St. Louis, MO Ride for Kids®
  Pittsburgh, PA Ride for Kids®                   July 18                                      September 19
    May 2                                       Minnesota Ride for Kids®                     Birmingham, AL Ride for Kids®
  ★Triangle Area (NC) Ride for Kids®             (White Bear Lake, MN) July 25                 September 26
    Raleigh-Durham, NC, May 2                   Marysville, OH Ride for Kids®                Sacramento, CA Ride for Kids®
  Torrance, CA Ride for Kids®                    July 31                                       October 3
    May 16                                      Hudson Valley Ride for Kids®                 Dallas-Ft. Worth, TX Ride for Kids®
  Atlanta, GA Ride for Kids®                     (Harriman, NY) August 1                       October 10
    June 6                                      ★Madison, WI Ride for Kids®                  Phoenix, AZ Ride for Kids®
  Richmond, VA Ride for Kids®                      August 8                                    October 17
    June 6                                      New England Ride for Kids®                   Louisiana Ride for Kids®
  ★Kansas City, MO Ride for Kids®                (North Oxford, MA) August 15                  (Baton Rouge, LA) October 24
    June 13                                     Ann Arbor, MI Ride for Kids®                 Dunnellon, FL Ride for Kids®
  Knoxville, TN Ride for Kids®                   August 29                                    November 7
    June 26                                     Asheville, NC Ride for Kids®
  ★Colorado Ride for Kids®                        August 29
    (Denver, CO) June 27                                                                                              ★New Event!
                                                                                                        THE HELPING HAND 15

       PBTF Salutes Top 2003 Ride for Kids® Performers
                                                                       thousands of fundraising motorcyclists across the country.
F   or over 20 years, the Ride for Kids® program has been
    raising money to support the Pediatric Brain Tumor
Foundation’s search for the cause and cure of childhood brain
                                                                       We salute the hardworking, caring top performing
                                                                       fundraisers of the 2003 Ride for Kids® season. You
tumors. The Foundation has become the largest source of                provide hope and comfort for families around the nation
non-governmental funding for pediatric brain tumor research            who are dealing with the devastation of having a precious
in the world because of the dedication and generosity of               child with a brain tumor.

    2003 National Ride for Kids® Top Clubs
           Club/Chapter                        Top Performer                           Location                  Total Raised

              Atlanta Abate                  Top ABATE Chapter                         Atlanta, GA                   $1,750

                                           Top American Gold Wing                      Chicago, IL                   $19,423
              AGWA IL-G
                                             Association (AGWA)
        Blue Knights Virginia #3               Top Blue Knights                       Richmond, VA                   $5,283

           BMWMOA of GA                        Top BMW MOA                             Canton, GA                    $11,434

                                          Top Gold Wing Road Riders                     Gurnee, IL                   $84,205
            GWRRA IL-G2
             GWTA WA-E                      Top Gold Wing Touring                      Washington                    $37,001
         Ann Arbor American                                                           Ann Arbor, MI                  $10,120
      Harley Owners Group #2171            Top Harley Owners Group

      Northwest Honda Red Riders            Top Honda Riders Club                      Houston, TX                   $25,455
                                                 of America
     Honda Sport Touring Association           Top HSTA Club                         Indianapolis, IN                $8,641

        Red Knights New York #8                Top Red Knights                    Croton on Hudson, NY               $4,540

          Connecticut Retreads                   Top Retreads                          Connecticut                   $5,619

        Southern Cruisers #65 of                                                     Birmingham, AL                  $46,166
                                             Top Southern Cruisers
     Women on Wheels, Baton Rouge           Top Women on Wheels                      Baton Rouge, LA                 $1,543

        Cycle Conservation Club          Top Cycle Conservation Club                  Ann Arbor, MI                  $26,915

                                           Top Christian Motorcycle                   Columbia, MD                   $5,300
            Redeemed Riders

    2003 National Ride for Kids® Top Dealers
           Dealership                          Top Performer                           Location                  Total Raised

         Gary’s Hobbie Shop                       Top Shop                           McDonough, GA                  $82,043

                                             Top Dealer in Nation                     Des Plaines, IL               $79,772
          Des Plaines Honda
                                              Top Honda Dealer
             Bob’s BMW                         Top BMW Dealer                          Jessup, MD                   $57,828

      American Harley-Davidson            Top Harley-Davidson Dealer                 Ann Arbor, MI                  $11,260

      Jim & Jim’s of Santa Rosa               Top Yamaha Dealer                      Santa Rosa, CA                 $16,886

           Lee’s Kawasaki                    Top Kawasaki Dealer                      Redding, CA                   $13,656

         Schaumburg Suzuki                    Top Suzuki Dealer                      Schaumburg, IL                 $10,402
       Honda Minimoto Featured
    at 2004 Ride for Kids® Events!
                                                                          T    he new Honda Minimoto Sport Racer, produced by Toy
                                                                               Quest, will be one of the prizes given away at all 29 Ride
                                                                          for Kids® events this year. The Honda Minimoto Sport Racer
                                                                          features a sleek, realistic design and includes the authentic
                                                                          logos and sponsors of the Honda Racing Team. This small,
                                                                          light and easy to maneuver mini bike is powered by a
                                                                          rechargeable lead acid battery and is extremely user friendly.
                                                                          The Honda Minimoto Sport Racer comes completely
                                                                          assembled; includes a set of keys to operate the ignition;
                                                                          features real pneumatic tires; front, side and rear safety
                                                                          reflectors; maximum weight limit of 175 lbs; a unique “quick
                                                                          charging” system; variable speed control; a welded steel frame;
                                                                          and a complete set of tools for quick and easy adjustments to
                                                                          the bike. Come and see the Honda Minimoto Sport Racer for
                                                                          yourself at one of this year’s Ride for Kids® events!

The Honda Minimoto Sport Racer by
Toy Quest – a new prize to be featured
at 2004 Ride for Kids® events.

                                        From the President’s Desk . . . . .2           Advocacy & Family Support . . . . .8
                                        Research Update . . . . . . . . . . . . .2     Task Force Leaders Conference . . .10
                                        Fantastic Fundraisers . . . . . . . . . .5     Ride for Kids® . . . . . . . . . . . . .12
                                        Where Hope Springs Eternal . . . .6            Honda Minimoto . . . . . . . . . .back

                                                                                     THE PEDIATRIC                                  Nonprofit Org.
  (828) 665-6891                           Web sites:                                                                                U.S. Postage
                                                                                     BRAIN TUMOR
  (800) 253-6530
  (828) 665-6894 fax
                                            www.rideforkids.org                      FOUNDATION                                      PAID
                                                                                                                                    Fairview, NC
                                                                                     302 Ridgefield Court                           Permit No.1157
  E-mail addresses:                        Would you like to receive                 Asheville, NC 28806-2201
   pbtfus@pbtfus.org                       our e-mail press releases
   rideforkids@pbtfus.org                  and updates?
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   research@pbtfus.org                     Send us an e-mail at
   donations@pbtfus.org                    pbtfus@pbtfus.org
The Helping Hand Newsletter
Managing Editor: Sara DiGiusto Sewell
Editor: Melissa Stanz
Design & Printing: Biltmore Press

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