Mrs. Young is the President and one of the Founding members of the Childhood Brain Tumor Foundation, an all-volunteer nonprofit organization founded in 1994 dedicated to supporting research, heightening awareness, and improving the quality of life for children affected by brain tumors. Her dedication to the cause comes from many cancer-related challenges her family has faced. At the age of 17 she lost her father to brain cancer. Her son is a long-term brain tumor survivor. She has taken these tragedies and turned her efforts to helping others in this situation through patient advocacy, awareness, and support for childhood brain tumor victims and their families.

Mrs. Young has served as a patient advocate, board member, and in various other roles in a number of related organizations, including:

• Patient Advocate Steering Committee (2011 to present)
• Patient Advocate Reviewer – Department of Defense, Peer Review Cancer Related Program (PRCRP) (2009 to present)
• Patient Advocate – Children’s Oncology Group (COG) Developmental Therapeutics Steering Committee (2007 to present)
• Patient Advocate – National Cancer Institute (NCI) Clinical Imaging Steering Committee (2011 to present)
• Consumer Advocate in Research and Related Activities – NCI Special Emphasis Panels and Specialized Panel of Research Excellence (2000 to present)
• Member, Central Institutional Review Board, Pediatrics (2009 to present)
• Member, NCI Safety Monitoring Committee (2007 to present)
• Member, American Brain Coalition (2009 to present)
• Patient Advocate--National Cancer Institute Sub-Committee D (2004 to 2006)
• Committee Member - Pediatric Brain Tumor Consortium Parent/Family Committee (2004 to present)
• Board Member - Pediatric Brain Tumor Consoritum Foundation (2007 to present)
• North American Brain Tumor Coalition (2001 to 2008, various roles, Secretary, Vice Chair, and last as Co-Chair)
• National Institutes of Health/National Cancer Institute--Brain Tumor Progress Review Group, participant (2000)

Education:

University of Maryland, BA, Arts/Psychology
International Symposium on Pediatric Neuro-Oncology, 1998 to Present
Society for Neuro-Oncology, 2000 – 2008, 2012 to present

Employment:

MCPS Educational Foundation, Inc. - Program Administrator (part-time)

Paul Graham Fisher is Professor of Neurology and Pediatrics, and by courtesy, Neurosurgery and Human Biology; the Beirne Family Professor of Pediatric Neuro-Oncology; and Division Chief of Child Neurology at Stanford University. He is also the Director of the Center for Brain and Behavior.

After starting his career on the faculty at Johns Hopkins, he was recruited back to Stanford in 1997 to Stanford, where he started the pediatric brain tumor program at Lucile Packard Children’s Hospital. That childhood brain tumor program is now the largest comprehensive childhood brain tumor center for research and care in the Western United States, and a member of the NCI’s Pediatric Brain Tumor Consortium. Professor Fisher is a nationally sought teacher, and in 2007 received both the 44th Annual Arthur L. Bloomfield Award and 39th Annual Henry J. Kaiser Family Foundation Award for excellence in teaching at the Stanford School of Medicine. At Stanford he also directs the undergraduate class “Cancer Epidemiology” in Human Biology. He is the Child Neurology Residency Director at the School of Medicine, Chair of the Section for Neurology in the American Academy of Pediatrics, and editorial board member for The Journal of Pediatrics and Journal of Neuro-Oncology, and previously Journal of Clinical Oncology. He is also a member of the Board of Directors for the National Brain Tumor Society and the Advisory Board for the Greater Bay Area Make-A-Wish Foundation.

His research focuses on epidemiology, therapy, and late effects of childhood brain tumors, and he has authored over 120 publications on brain tumors and other neurology topics. His epidemiologic work explores biologic underpinnings of childhood brain tumors, particularly medulloblastoma, ependymoma, and germ cell tumors.

His personal interests are his wife and three children, along with skiing, travel, gardening, bad golf, and anything baseball.

Academic History:

B.A., with Distinction, Stanford University, 1985
M.D., University of California, San Francisco, 1989
M.H.S., Johns Hopkins University, 1995

Paul G. Fisher, M.D. is a member of the Childhood Brain Tumor Foundation’s Medical/Scientific Advisory.

Brian R. Rood, MD is an Associate Professor of Pediatrics in the Center for Cancer and Blood Disorders at Children’s National Medical Center whose primary clinical focus is pediatric neuro-oncology. Dr. Rood joined the faculty of Children’s National in 2002 after completing a fellowship in Pediatric Hematology/Oncology as well as a research fellowship in the molecular biology of brain tumors, both at Children’s National and Children’s Research Institute. Dr. Rood received an undergraduate degree in English Literature from the Pennsylvania State University and his medical degree from Jefferson Medical College. He completed his training in General Pediatrics at the University of Vermont.

Dr. Rood is the Director of Clinical Neuro-oncology at Children’s and cares for brain tumor patients on the inpatient oncology ward and in the outpatient clinic. He is co-PI with Dr. Roger Packer of the Pediatric Brain Tumor Consortium clinical trial program at Children’s. He also runs an active NIH funded molecular biology lab in the Center for Cancer and Immunology Research of the Children’s Research Institute. His lab is working to elucidate the mechanisms whereby the loss of the tumor suppressor gene HIC1 leads to the genesis of brain tumors. He is also investigating the proteome of cerebrospinal fluid in order to discover a protein marker for the presence of pediatric brain tumors.

Click here to view Dr. Rood's full biography.

Dr. Roger J. Packer, MD is Senior Vice-President, Center for Neuroscience and Behavioral Medicine, and Chairman of Neurology at the Children’s National Medical Center (CNMC). He is Director of both the Brain Tumor Institute and the Daniel and Jennifer Gilbert Neurofibromatosis Institute. Dr. Packer’s present academic titles include Professor of Neurology and Pediatrics at The George Washington University and Clinical Professor of Neurosurgery at the University of Virginia in Charlottesville, Virginia. Prior to coming to CNMC, Dr. Packer was Director of the Brain Tumor Program and Professor of Neurology and Pediatrics at the Children’s Hospital of Philadelphia, University of Pennsylvania. He is an active participant at the National Institutes of Health and has a contract with the combined NCI/NINDS Neuro-Oncology Program to provide neuro-oncological clinical expertise.

Throughout his career, Dr. Packer has been heavily involved in clinical and applied basic science research. His clinical research has touched on various aspects of adult and child neurology and neuro-oncology, including adult and pediatric brain tumors, neurofibromatosis type 1, the neurologic aspects of childhood neurogenetic diseases, and multiple other topics in general child neurology. Much of his research has focused on the development and performance of clinical trials for adults and children with neurologic and neuropsychiatric disorders, and he has received personal loan support for this research. Many of the clinical trials in Neurofibromatosis and brain tumors are translational, bringing advances from the bench to the bedside expeditiously.

Presently, Dr. Packer is principal investigator at Children’s National for the Pediatric Brain Tumor Consortium (PBTC), formed under the auspices of the National Cancer Institute; Chairman of the PBTC Low-Grade Glioma Committee; Group Chair of the newly-formed Neurofibromatosis Clinical Trials Consortium; and he is Chair of the Medulloblastoma Committee of the Children’s Oncology Group. He has worked closely with the NCI and NINDS, and has served on multiple committees setting the directions for neurologic clinical and basic science research for the future. He headed the efforts in pediatrics for the program review, held by the NCI and NINDS, for brain tumors. Much of Dr. Packer’s clinical research has been translational in nature. He has been part of studies evaluating the molecular genetics of childhood and adult neurologic diseases and has also coordinated the first gene therapy study for children with malignant brain tumors in the United States. The majority of the studies now being coordinated by Dr. Packer are studies evaluating innovative agents aimed at the molecular underpinnings of neurologic disease. He has published over 275 original articles and 250 reviews and chapters.

Click here to view Dr. Packer's full biography.

Vice Chair for Research, Department of Pediatrics, Baylor College of Medicine

Susan M. Blaney, M.D., a Professor and Vice Chair for Research in the Department of Pediatrics at Baylor College of Medicine, has served as the Chair for Developmental Therapeutics in the COG since 2008. She previously served as the Vice Chair for the COG Phase I Consortium (2000-2008) and the POG Phase 1 Sub-Committee (1996-2000).

Dr. Blaney has more than 20 years experience in the design, development, and implementation of all aspects of NCI-sponsored and industry-sponsored new agent clinical trials for children with refractory/recurrent cancer. She also has extensive experience in the design and evaluation of preclinical in vitro and pharmacology studies of anti-cancer agents. Dr. Blaney has authored more than 75 publications specifically related to the clinical development of anticancer agents for children and has numerous other publications related to the preclinical development or pharmacology of anticancer therapies. She has served on NCI Special Emphasis panels for new agent development, FDA advisory groups and industry advisory panels. As a member of the Investigational Drug Steering Committee Dr. Blaney has served on its coordinating and pharmacology sub-committees.

The Childhood Brain Tumor Foundation (CBTF) is an all-volunteer organization founded by families, friends and physicians of children with brain tumors. Our mission is to raise funds for (pediatric) scientific research, to heighten public awareness of this more devastating disease, and to improve prognosis and quality of life for those that are affected.

All donations are tax-deductible. Please visit our Support CBTF page to see ways in which you can donate to the Childhood Brain Tumor Foundation.

We are determined to find a cure and offer hope to parents facing heartbreak.

CBTF Beginnings

Founded and incorporated in Virginia 1994, dissolved.  In 1998, CBTF became incorporated as a Maryland charity.  The Foundation, a 501(c) (3), strives to meet the goals of our mission. We are dedicated to serving the needs of families and children with brain tumors, in hopes of improving the quality of life and find cures for pediatric brain tumors. Annually, CBTF funds basic science or clinical research for pediatric brain tumors, conferences, and other programs.

We provide informational materials on our website and mail other information (nationally and internationally) upon request. If you would like to receive information, need a resource list, referrals to experts for consults, or to join our mailing list, please contact us with your name, address, phone number, and e-mail address. Any personal information we collect is kept private.
 
We do not sell, rent, or distribute our list to anyone.

Some families do submit stories and photographs for our newsletter and they may be posted on our website unless requested otherwise.  Stories may be written under a pen name for privacy, if preferred.

Please feel free to contact using our Contact Us form.  Questions:  Email preferred This email address is being protected from spambots. You need JavaScript enabled to view it.

CBTF is not responsible for the information on the links we have selectively posted and are not endorsements. The information on our website is not a substitute for medical advice. Information may be subject to change.

Board Members Jeanne P. Young, President Carol Cornman, Vice President Kirsten Baker, Vice Pres./ Secretary James M. Young, Treasurer Directors Elizabeth Irvin Susan Lyon, R.N. John Moore Claire Wynn Ombudsmen Gilbert P. Smith, J.D. Grace Powers Monaco, J.D. Special Scientific Advisor Gil Smith, Ph.D., Bethesda, MD Legal Advisor Frederic Rickles, Esq., NY Advisor - Survivorship Lauren Hancock, RN, MSN, CPNP, AC       Children's National Debbie Lafond, DNP, PNP-BC                              Children's National  Katie Dinterman McHugh MSN, RN                    Children's National	Founding Advisor / Advisory Chairman Roger J. Packer, M.D. pediatric neurologist Children's National Hospital Washington, D.C. Scientific Advisors Susan M. Blaney, M.D. pediatric oncologist Texas Children's Cancer Center Houston, TX Kenneth J. Cohen, M.D. pediatric oncologist The Johns Hopkins University School of Medicine Baltimore, MD Charles G. Eberhart, M.D, Ph.D. Johns Hopkins University School of Medicine Paul G. Fisher, M.D. pediatric neuro-oncologist Stanford Cancer Center Stanford, CA Eugene Hwang, M.D.                                                          pediatric neuro-oncology                                                 Children's National Hospital Lindsay B. Kilburn, M.D.                                                                                  pediatric neuro-oncology                                                  Children's National Hospital Tobey J. MacDonald, M.D. pediatric oncologist Aflac Children's Healthcare Atlanta, GA Eva Perdahl Wallace, M.D., Ph.D. pediatric oncologist                                                               Kaiser Permanente Eric Raabe, Ph.D. M.D.                                                   pediatric oncologist The Johns Hopkins University School of Medicine Baltimore, MD Brian R. Rood, M.D. pediatric oncologist Children's National Hospital Washington, D.C. M. Isabel Almira Suarez, M.D.                                            Children's National Hospital, Washington, DC Katherine E. Warren, M.D. pediatric oncologist Dana-Farber Cancer Institute, Boston

Community Representatives

Jarrod and Cherie Aucoin, LA
(Ali Rose)
Mary T Callahan, TX
Tierney Callahan, TX
   (Run with the Saints)
Doug & Lydia DeFeis, FL
Michael Greenspun, MD
Kyle Killeen, NJ
   (Kyle's Heroes)
Kate Lund, MA
Barbara Norris, MA
Carol A. Parham, CT
Linda Quackenbush Turner, UT
Andrew Schoenfeld, CA
Michael Schoenfeld, DC
Diane Smith, MD
   (JKS Spirit Fund)
Brittany Truitt, FL
Cindy Truitt, FL
   (Tennis for Tumors)
Nancy Ward, IL
Susan M. Young, MD