PABI Plan - The Sarah Jane Brain Project

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educated and thus are less aware of the various manifestations of brain injury. The lack of understanding may lead to less tolerance, inevitably making life even more difficult for those dealing with the day-to-day effects of a child/young adult with a PA/TBI. Finally, the lack of much-needed mental health support in a rural setting for families of children/young adults with PA/TBI is a huge problem. Family members having trouble coping with the grief due to having essentially “lost” their child due to a PA/TBI are in great need of mental help, but there is a lack of mental health care in Rural America and a family member who is the primary caregiver of a child/young adult with PA/TBI in particular may not be able to travel long distances to get the mental help they require. This may further lead to increased rates of depression and drug or alcohol use. Teletherepy in these cases, when there is a lack of nearby psychiatric support, would be hugely beneficial to family members. Additional Proposed Solutions 1. Prevention strategies and programs specifically designed when necessary for Rural/Frontier Regions of U.S. 2. Utilize telehealth technologies in the assessment and treatment of PA/TBI during Acute, Reintegration and Adult Transition phases of the continuum of care. 3. Transmitting medical images and data for diagnosis and/or disease management 4. Exchanging health services or education live via videoconferencing 5. Prevention of secondary and tertiary injury with promotion of good health by patient monitoring and follow up 6. Health advice by telephone in emergent cases 7. Distance education and training for professionals, families and individuals 8. Administrative uses including meetings and presentations 9. online information and health data management 10. healthcare system integration 11. asset identification, listing and patient to asset matching and movement 12. patient movement and remote admission 13. grant programs that bring necessary equipment and training to the underserved rural and frontier communities and cost-based rural ambulance reimbursement The Institute of Medicine in a report, “Quality Through Collaboration: The Future of Rural Health” examined the quality of health care in rural America and identified a five-pronged strategy which would address the challenges faced by rural communities. These are: 1. adopt an integrated approach to addressing both personal and population health needs; 2. establish a stronger health care quality improvement support structure to assist rural health systems and professionals; 3. enhance the human resource capacity of health care professionals in rural communities, and the preparedness of rural residents to actively engage in improving their health and health care; 4. assure that rural health care systems are financially stable; and 5. invest in an information and communications technology (ICT) infrastructure, which has enormous potential to enhance health and health care over the coming decade. Additional Research Priorities 66
1. demonstrating equivalence of assessment and therapy to in-person assessment and therapy 2. building new data collection systems to digitize information a therapist can use in practice 3. Further research in telehaptics (the sense of touch) and virtual reality may broaden the scope of telerehabilitation practice 4. Increase use of artificial intelligence, wireless technology, PDA and Cellular technologies 67
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The Honorable Kathleen Sebelius Sec
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promote the integration and full in
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The National Pediatric Acquired Bra
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Phase Three consisted of having the
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the fact that their brains are stil
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methods developed by the SJBP to sh
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Two-Year Milestones Quarter 1: •
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Figure 2: CDC figures for death and
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PA/TBI and their families, delivere
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Page 26 and 27: implications of shaking a baby; and
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Mattel Children's Hospital UCLA Pro
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BIOGRAPHICAL SKETCH Provide the fol
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17. Madikians A and Giza CC. A Clin
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Sarah Jane Brain Family State Lead
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The Children's Hospital Profile con
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CURRICULUM VITAE JEANNE E. DISE, Ph
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Curriculum Vitae Jeanne E. Dise Pag
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Yale‐New Haven Children's Hospita
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Yale‐New Haven Children's Hospita
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2001 - Associate Professor, Sect of
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Major goal: to provide education in
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Nemours / Alfred I. duPont Hospital
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First Name: Michael MI: A Last Name
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Children's National Medical Center
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Program Director/Principal Investig
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University of Miami Miller School o
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FF Principal Investigator/Program D
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Huang TT, He D, Kleiner G, Kuluz J.
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Children's Healthcare of Atlanta Pr
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Children's Healthcare of Atlanta Pr
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Principal Investigator: Haarbauer-K
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Center on Disability Studies at The
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Jean L. Johnson, DrPH April 19, 200
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Jeffrey K. Okamoto M.D. Curriculum
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Idaho State University / Institute
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NAME RUSSELL C. SPEARMAN BIOGRAPHIC
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Spearman, Russell, C Spearman, R.C.
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RESEARCH FUNDING Current Support: I
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University of Illinois Chicago Prof
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University of Illinois Chicago Prof
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1997 Margaret Faust Thesis Award, S
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James Whitcomb Riley Hospital for C
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PROGRAM DIRECTOR: Jodi L. Smith, Ph
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American Association of Anatomists
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IU Faculty Steering Committee ‐ 7
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University of Iowa Children's Hospi
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NAME Lindgren, Scott D. eRA COMMONS
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Arroyos-Jurado, E., Paulsen, J.S.,
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Center for Child Health and Develop
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Center for Child Health and Develop
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Tyler 2 Glang, A., Dise-Lewis, J.,
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Tyler 4 DePompei, R., Glang, A., &
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University of Kentucky Hospital Pro
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University of Kentucky Hospital Pro
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Joseph A. Iocono, M.D. Curriculum V
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Joseph A. Iocono, M.D Curriculum Vi
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Louisiana Health Care Quality Forum
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Shannon Robshaw, MSW is the Executi
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Maine Institute of Human Genetics a
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Maine Institute of Human Genetics a
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Principal Investigator/Program Dire
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Kennedy Krieger Institute Profile c
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Kennedy Krieger Institute Profile c
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Children's Hospital of Boston and H
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Date Updated: November 5, 2008 CURR
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2001- Member, Advisory Committee Ha
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underway to best direct prevention
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2. Mooney DP, Lewis JE, Connors RH,
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40. Waltzman M, Baskin M, Wypij D,
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19. Downard C and Mooney DP. Pediat
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47. Kangas KK, Lee LK, Forbes P, Os
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29. Kansas Trauma Conference, Wichi
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Date Prepared: January 5, 2009 Name
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Regional 2006- Vice President of Ma
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Honors and Prizes Year Name of Hono
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2000 Pediatric Spine Injuries Singl
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2006 Infant Skull Deformities Pedia
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2002 Management of Sports-related C
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Clinical Innovations I have been ab
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10. Dunn IF, Proctor MR, Day AL. Lu
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Trauma Surgery, Neurology, Neuropsy
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Michigan Public Health Institute an
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Michigan Public Health Institute an
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Vonderheid, S.C., Pohl, J. M., Tann
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Mayo Clinic Profile continued Title
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Mayo Clinic Profile continued Title
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LICENSURE Minnesota HONORS/AWARDS S
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Spina Bifida in Adulthood Physical
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Sherilyn W. Driscoll, MD Page 6 of
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-Implementation of new pediatric wh
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BIBLIOGRAPHY Peer-reviewed Articles
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Children's Rehabilitation Services
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Curriculum Vitae Shannon Janine Smi
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Shannon Janine Smith, MD Page 2 Hon
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Center, Pediatric Grand Rounds Shan
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Saint Louis Children's Hospital Pro
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Saint Louis Children's Hospital Pro
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Completed Research Support Principa
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Montana State University Billings /
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Montana State University Billings /
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• Region IV Paraeducator Summer I
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Madonna Rehabilitation Hospital Pro
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Madonna Rehabilitation Hospital Pro
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Staff Occupational Therapist: 1997-
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Sunrise Children's Hospital Profile
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Sunrise Children's Hospital Profile
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Dartmouth Medical School Profile co
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BIOGRAPHICAL SKETCH NAME POSITION T
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Brain Injury Association of New Jer
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Biographical Sketch Barbara Geiger-
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University of New Mexico School of
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Mount Sinai Medical Center Profile
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The Clinical Center for the Study o
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NAME Stephen R. Hooper eRA COMMONS
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Hooper, S.R., Hatton, D., Schaaf, J
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Still pending Profile continued Tit
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Cincinnati Children's Hospital Medi
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Oklahoma State University / Center
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CURRICULUM VITAE NAME Stanley E. Gr
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Courtesy Staff, 1990-1998 Leave of
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OSU-CHS International Medicine Club
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ViroPharma Protocol 637-303: Princi
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Media presentations: Medical Minute
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Teaching Research Institute and Wes
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BIOGRAPHICAL SKETCH NAME POSITION T
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Voss, J., Stevens, T., Glang, A., &
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Children's Hospital of Pittsburgh o
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BIOGRAPHICAL SKETCH Provide the fol
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C. Research Support. List selected
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Puerto Rico Medical Center / Univer
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Puerto Rico Medical Center / Univer
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LICENCE TO PRACTICE MEDICINE: (plac
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REFERENCES Dr. Nathan Rifkinson, UP
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Hasbro Children's Hospital Child Pr
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Hasbro Children's Hospital Child Pr
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1990-1996 Director of Medical Progr
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infant death and suspected physical
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Medical University of South Carolin
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Medical University of South Carolin
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Role: PI Principal Investigator/Pro
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Center for Disabilities / Sanford S
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Center for Disabilities / Sanford S
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• February 2004 - May 2005: Indep
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• September 2008: Presentation at
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• Coordinator for LEND (The South
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University of Tennessee Profile con
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University of Tennessee Profile con
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4. Johnson, R. K., Hough, M. S., Ki
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Center for BrainHealth / The Univer
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Center for BrainHealth / The Univer
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McCauley, S.R., McDaniel, M.A., Ped
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Levin, H. S., Mendelsohn, D. B., Li
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University of Utah Profile continue
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University of Utah Profile continue
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5. Statler KD, Jenkins LW, Dixon CE
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F. Invited Presentations Internatio
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The Vermont Center for Children, Yo
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The Vermont Center for Children, Yo
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2006-Present Chairman of the Child
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Abdellaoui A, Bartels M, Hudziak JJ
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UVA Children's Hospital and Kluge's
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UVA Children's Hospital and Kluge's
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B. Selected peer-reviewed publicati
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University of Washington / Harborvi
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University of Washington / Harborvi
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West Virginia Brain Injury Associat
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West Virginia Brain Injury Associat
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Phone: (304) 345-7757 405 Capitol S
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Children's Hospital of Wisconsin Pr
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Children's Hospital of Wisconsin Pr
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Brain Injury Association of Wyoming
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EDUCATION Dorothy Worrell 2302 Sage
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of Developmental Disabilities; assi
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PUBLICATIONS Member of VISIONS Admi
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n/a Profile continued Title/Descrip
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References 1. Adelson, P.D. (2008).
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30. Centers for Disease Control and
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62. Haddon, W. (1973). Energy damag
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96. Perel, P., Yanagawa, T., Bunn,
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