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 peer-reviewed grant 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.

Dr. Bruce practices neurosurgery in Washington, District of Columbia. He is one of the pioneers of modern pediatric neurosurgery. His specialties include cranial base surgery, craniofacial anomalies, epilepsy, and brain tumors.

Education: University Of Edinburgh, College Of Medicine & Veterinary Medicine Edinburgh, United Kingdom
Graduated: 1966

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.

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 us:

20312 Watkins Meadow Drive
Germantown, Maryland 20876

Telephone: 301.515.2900
Toll Free: 877.217.4166
E-mail: 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
Kiren Day, Vice Pres./ Secretary
James M. Young, Treasurer


Elizabeth Irvin
Susan Lyon, R.N.
Mario Martinez, Sr.
Michelle O'Brien, R.N.
Claire Wynn


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 Health System

Debbie Lafond, DNP, PNP-BC, Children's National Health System
Aziza Shad, M.D.
Georgetown University Hospital


Founding Advisor / Advisory Chairman

Roger J. Packer, M.D.
pediatric neurologist
Children's National Health System
Washington, D.C.

Scientific Advisors

Susan M. Blaney, M.D.
pediatric oncologist
Texas Children's Cancer Center
Houston, TX

Derek Bruce, M.D.
pediatric neurosurgeon

Peter C. Burger, M.D.
The Johns Hopkins Hospital
Baltimore, MD

Kenneth J. Cohen, M.D.
pediatric oncologist
The Johns Hopkins Hospital
Baltimore, MD

Paul G. Fisher, M.D.
pediatric neuro-oncologist
Stanford Cancer Center
Stanford, CA

George Jallo, M.D.
pediatric neurosurgeon
The Johns Hopkins Hospital
Baltimore, MD

Tobey J. MacDonald, M.D.
pediatric oncologist
Aflac Children's Healthcare,
Atlanta, GA

Eva Perdahl, M.D., Ph.D.
pediatric oncologist

Brian R. Rood, M.D.
pediatric oncologist
Children's National Health System
Washington, D.C.

Katherine E. Warren, M.D.
pediatric oncologist
Bethesda, MD

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
Danielle Kerkovich, IL
Kyle Killeen, NJ
Peggy Killeen, NJ
   (Kyle's Heroes)
Danielle Leach, MD
Kate Lund, CT
Alyssa Lyon, MD
Cady Lyon, MD
Danielle Lyon, MD

Barbara Norris, MA
Carol A. Parham, CT
Linda Quackenbush Turner, UT
Pat & Kevin Schlosser, IN
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
Beth Zermani, MA


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