![]() Hefner served on the Board of Directors for 12 years and is now a Special Advisor to the Board, as well as chair of the Research Committee. One of the founders of the CHARGE Syndrome Foundation, Ms. Hefner has written and edited numerous materials for families and professionals, including the CHARGE Syndrome Management Manual for Parents, the New Parent Packet, and Professional Packet. In addition to writing journal articles on CHARGE syndrome, Ms. Sandra Davenport at the University of Missouri, Columbia. Hefner first became interested in CHARGE syndrome in 1982 when working with Dr. Margaret Hefner is a Genetic Counselor and Associate Professor in the Division of Medical Genetics, Department of Pediatrics at Saint Louis University School of Medicine. In 2005 he was awarded the Star in CHARGE by the CHARGE Syndrome Foundation. CHARGE conference, every Australasian conference, the European conference, Scandinavian conference, and conferences in several other countries. In addition to his publications on CHARGE, he has presented at every U.S. When it became increasingly clear in the mid-1990s that many children with CHARGE develop severe behavioral problems, he began to devote most of his research to this problem. Hartshorne has been interested in CHARGE Syndrome since 1989 when his son was born with the syndrome. In conclusion, thanks to the editors and the authors for an invaluable text to professionals, parents, and educators." About the Authorĭr. The editors have done a great job crossing the barriers among these professionals in order for the book to serve as a professional and parental educational resource. I would also recommend this book to family members of individuals with CHARGE syndrome for educational and counseling purposes, to help parents understand the long-term health consequences of the syndrome and the steps they can take to help their child. It allows a quick grasp of the essential points for multidisciplinary collaboration to provide appropriate evaluations, referrals, guidance, and treatment for individuals with CHARGE. ![]() Therefore, it is a must-have clinical reference book for specialists who are involved in the care of individuals with CHARGE. It is not uncommon to see these professionals rolling on the floor with our kids, eating meals and spending most, if not all of their free time at Conference with the families, collecting data for research from their hotel rooms and answering questions about “how-to’s” and “what-to’s” pertaining to our kids into the wee hours of the mornings.Wafaa Kaf, Communication Sciences and Disorders Department, Missouri State University, Springfield, Missouri, USA, International Journal of Audiology 2012, (2012): "Edited and authored by experts from a wide score of pediatricians and professionals, this is an excellent work that gives insight about everything professionals need to know about CHARGE syndrome in one book. The CHARGE Conference is not about professionals talking AT you…it is about professionals who care so deeply that many of them have devoted their entire careers to study, observe and wrap their entire lives around our kids, teens and grown-ups who have been impacted by CHARGE Syndrome. A time to reconnect with old friends, finally meet face-to-face with “cyber” friends and a time to make new friends, all while learning more about this rare genetic disorder that has so profoundly impacted all of our lives. 1,200 people consisting of individuals with CHARGE, families, caregivers and professionals spending 4 days of fun, education and relaxation. Welcome to the 12th Bi-Annual International CHARGE Syndrome Conference. Where would you go to find kids randomly laying on the floor, suction machines and vents whirring in the distance, chewy tubes in all colors, feeding tubes and pumps, walkers, hearing aids, interpreters and every imaginable kind of wheelchair…a hospital? No, a weekend oasis where all of the above and more is the norm. ![]()
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