Trisomy Conference Presentations, 1997 – 2012
2012 St Louis, MO Conference Presentations
Perspectives on the Medical and Genetic Aspects of the Trisomy 18 & 13 Syndromes. (St. Louis, 2012) John C. Carey, MD, MPH, presented this update on the frequency of births, prenatal diagnosis techniques, chromosomal abnormalities, survival and other aspects of our children’s genetic abnormalities.
Transition Points in the Trisomy Journey (St. Louis, 2012) was a morning workshop led by Joyce Coleman, a Licensed Clinical Social Worker with over 20 years of experience in health care. The focus of her therapy is to help both individuals and families manage life-changing events and transitions. This workshop was an opportunity for parents to talk about their experiences soon after the diagnosis of their child and at other transition points in their child’s and therefore their own life. Topics were skillfully guided by questions and the introduction of specific subjects.
2011 Chicago, IL Conference Presentations
Caregiving for a Special Needs Child. (Chicago, 2011) Maraline Mattke is a Licensed Clinical Social Worker who has special training to help people deal with their individual situations and life challenges. This presentation discusses Stress and Caregiving and provides an understanding of how stress impacts nearly everything we do. This understanding helps immensely in dealing with the myriad of problems we encounter daily.
The Pediatric Medical Home. (Chicago, 2011) Dr. Larry Desch directs both the clinical and educational aspects of Developmental Pediatrics at Hope Children’s Hospital, a teaching affiliate of Chicago Medical School, where he is also a clinical associate professor. His publications have focused on growth assessments of children with special needs, developmental neurophysiology and the use of assistive technology. He has been actively involved with state agencies dealing with children with disabilities and special health care needs. Within the American Academy of Pediatrics, Dr. Desch is involved with the development of the Medical Home for Children with Special Health Care Needs project and is involved with work with autism. This presentation focuses on the need for patients to have a “Medical Home.”
Trisomy 18, Trisomy 13 and Related Disorders. (Chicago, 2011) This genetic syndrome overview workshop was presented by Dr. Carey and Dr. Israel, with Dr. Carey presenting some quick genetics of chromosomes, then covering the basics of trisomy 18. Dr. Israel focused on trisomy 13, including translocations, and she added information about nondisjunction and cytogenetic analysis. Some further explanation of terminology has been added for the article.
Marriage and our Trisomy Child. (Chicago, 2011) Valerie Lentz, LCSW, who has more than ten years of experience working with families of special needs children, discussed the most common challenges that couples face in their marital/romantic relationship, as well as ideas on how to address those issues in order to maintain a strong and healthy partnership.
Healing Your Spirit. (Chicago, 2011) This workshop provided a new perspective on God and His plan for us. It shed some light on where God is when you can’t seem to find Him. The presenter, Ms. Diane Robinson, is a lay leader at Grace United Methodist Church in Joliet, IL.
2010 Sioux Falls Conference Presentations
Medical Ethics Issues/Decision Making. (Sioux Falls, 2010) Medicine, although grounded in the scientific method and dependent on changing technologies, is also both personal and intimate. Ethics is the discipline that systematically analyzes and rationally justifies the moral choices that are made. This excellent presentation addresses what is to be done or not done in a hospital setting and how the decision is influenced by determining, according to ethical principles, what is the right action or treatment for an individual patient.
Trisomy 13 and 18 and Quality of Life: Treading “Softly” (Sioux Falls, 2010) Dr. Lawrence Fenton is a specialist in Pediatrics and Pediatric Palliative Care. He is board-certified in neonatology-perinatal medicine and pediatrics and is professor emeritus, Department of Pediatrics, Sanford School of Medicine of the University of South Dakota. In retirement he has turned to pediatric palliative care. From the notes taken from this presentation you can link to the companion article published in the American Journal of Medical Genetics.
The Knitting Club A knitting workshop at the 2010 Sioux Falls conference has resulted in a SOFT service project for newborns. SOFT knitters welcome anyone wishing to join our virtual knitting club and knit or crochet preemie or newborn blankets and hats.
New Molecular Diagnostic Methods in Genetics (Sioux Falls, 2010). Patricia Crotwell, Ph.D., director of Sanford Clinic USD genetics laboratory, is a specialist in genetics and adult, pediatric and prenatal clinical cytogenetics. She is an assistant professor of pediatrics at Sanford School of Medicine of the University of South Dakota.
2009 Roanoke, NC Conference Presentations
We (those in the ER) Are as Scared as You (parents) Are (Roanoke, 2009) Dr. Kerry Powell is an emergency room physician at Carilion Clinic Emergency Services in Roanoke. He graduated from Leeds University Faculty Of Medicine (UK), did post graduate training at St. James Hospital in Leeds and did his residency in internal medicine at Bridgeport Hospital and Brooklyn Hospital Center. He taught at Johns Hopkins for five years.
Complicated Grief (Roanoke, 2009) This workshop was presented by Chaplain Buster Stockman, father of Lindsay, a nine year old with trisomy 18, and of her older siblings Drew and Jordan. He and his wife Lynne have been active members of SOFT.
Related Disorders (Roanoke, 2009) Stephen Braddock has been a professor of clinical Genetics at the University of Virginia School of Medicine since 2006. Dr. Braddock began his presentation with an overview of chromosomal genetics and moved to information about specific chromosomal syndromes considered in SOFT as related disorders.
Prior Conference Presentations
Messages of Faith, Hope and Healing (Salt Lake City, 1997) The conference keynote speaker was Richard Paul Evans. He was an advertising executive, who wrote a story for his two young daughters called The Christmas Box, that he shared with his family and friends by printing twenty copies for Christmas, 1992. The story spread rapidly and became a New York Times best-selling book.