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The 10th TNSSG, Inc. Conference & CLINIC PROGRAMWestin O’Hare Hotel, Rosemont, Illinois USAJuly 28-30, 2011
The Noonan Syndrome Support Group, Inc. 10th International Conference (PDF 2011 Meeting Package 14 pages) Tentative Conference/ workshop Schedule Thursday July 28th Meals on Your Own 8:45 – 5:00 PM Rotating Clinic Exams by appointment (Vision, Genetic, Orthopedics exams) 12:00 – 5:00 PM TNSSG Conference Registration 7:00 – 9:30 PM Dessert Welcome Reception - A family social gathering with our doctors, Noonan, CFC & Costello families. Everyone welcome! Friday July 29th Breakfast General Session: An overview (history) of Noonan syndrome - Presented by Dr. Jacqueline Noonan General Session: The significant role of a Geneticist in Noonan syndrome- Looking at Genes- diagnosis Presented by Dr. Judith Allanson General Session: Cardiac disease and Cardiac gene discovery in Noonan syndrome Presented by Dr. Amy Roberts General Session: Gene discovery, and what the future holds, what it means for people with Noonan syndrome Presented by Dr. Gelb General Session: Growth Hormone and Noonan syndrome - What we have learned Presented by Dr. Romano Lunch Afternoon Workshops to Choose from:
Dinner on Your Own Saturday July 30th 8:30 – 5:00 PM Ras/MAPK Pathway Scientific Symposium for researchers Breakfast Workshops: Session 1 (choose one)
Workshops: Session 2 (choose one)
Lunch Workshops: Session 3 (choose one)
Workshops: Session 4 (choose one)
6:00 – 10:00 PM Banquet Dinner and Silent Auction – workshop Descriptions ABC’s of Endocrinology & Growth in CFC Children Hear all about the details of normal endocrinology development for boys and girls and how CFC Syndrome might impact your child’s growth and development. Presenter: Alicia Romano, MD, Pediatric Endocrinology, New York Medical College, Valhalla, NY Adaptive behavior, academic skills & the benefits of neuropsychological testing for individuals diagnosed with Noonan and CFC syndrome Families of individuals with Noonan and CFC syndrome may face a variety of challenges in determining how to best foster their child's academic, language and social abilities as well as everyday life skills. This presentation will cover recent research on this topic and provide a forum for questions and discussion regarding behavior and learning in these syndromes. Benefits of testing individuals for clinical, academic and research purposes will also be discussed. Presenter: Rene Pierpont, PhD., Research Associate, University of Wisconsin, Madison Don’t miss the eye in Noonan and CFC! It has been long noted that ocular findings are common in individuals with Cardiofaciocutaneous, Noonan and Costello syndromes. Recent studies in cell culture and animal models have demonstrated the role of Ras/MAPK cascade in the development of the eye. Our work with the families and individuals with Ras/MAPK syndromes has expanded our knowledge of the ophthalmic manifestations in these syndromes. We hope to build on these findings and look to newer treatment options learning from the similarities and differences among the individuals who share a mutation in a common pathway, common gene, or even a common mutation. Presenter: Suma Shankar, MD PhD, Assistant Professor, Department of Human Genetics and Department of Ophthalmology-Division of Medical Genetics at Emory University School of Medicine, Atlanta, Georgia Taming the Tiger: Basic Principles To Address Behavioral Issues We are designed to be social individuals. We learn from each other through observation and imitation. If neurology is interrupted, then it only makes interpretation, imitation and learning much more difficult for a child who is developing. It is hard enough for "typical" children to learn appropriate behavior. A child with a deficit has more obstacles to overcome. Understanding the origin of unwanted behavior is paramount in knowing how to address and change them. This session is designed to assist parents and caretakers in identifying where behaviors come from and learn basic behavioral interventions to increase desired outcome. Questions are encouraged. Presenter: Melinda Wolford, PhD, NCSP (Nationally Certified School Psychologist) and Mother to Stone, CFC Syndrome Cardiology Concerns with Noonan & CFC Syndromes Many Noonan & CFC individuals experience some type of heart disease. Learn more about the different heart conditions from a doctor who has been caring for individuals with various syndromes for over 50 years and from a doctor who has researched the cardiology records from individuals enrolled in the CFC Registry. Presenter: Jacqueline Noonan, MD, Retired Pediatric Cardiologist, UK Healthcare’s Kentucky Children’s Hospital Mary Ella Pierpont, MD, Geneticist & Pediatric Cardiologist, Children's Hospital of Minnesota CFC and Orthopedic Issues Learn about the potential orthopedic problems seen with CFC patients along with what can be done with surgery or other treatments. Presenter: Kent Reinker, MD PhD, Clinical Professor of Orthopedics at the University of Texas Health Sciences Center, San Antonio The GI System: Impact on Feeding and Nutrition Reflux disease, poor weight gain, feeding problems, constipation, diarrhea, abdominal pain and gastrointestinal discomfort are commonly seen in our children. What is our understanding of these problems and their possible causes? What are the appropriate tests and how can they help. We will explore these questions along with potential treatment options? Presenters: Dr. Dumont, Char Laursen MS, CCC SLP/L Pediatric Speech/Language Pathologist, TheraPeds, Ltd., Owner, Naperville, Illinois Cindy Baranoski MS, RD, LDN, Manager Nutrition Department, Pediatric Nutrition Therapist, Feeding Clinic Coordinator, Easter Seals DuPage & the Fox Valley Region, Villa Park, Illinois Feeding/Nutrition/GI Question/Answer Session Follow up to the above presentation on GI, Feeding and Nutrition. This is your time to ask all the questions of the team. Presenters: Dr. Dumont, Char Laursen MS, CCC SLP/L Pediatric Speech/Language Pathologist, TheraPeds, Ltd., Owner, Naperville, Illinois Cindy Baranoski MS, RD, LDN, Manager Nutrition Department, Pediatric Nutrition Therapist, Feeding Clinic Coordinator, Easter Seals DuPage & the Fox Valley Region, Villa Park, Illinois Parent to Parent, Heart To Heart – Special Needs Legal And Future Planning... It Is Not Optional When you have a child with special needs, planning for that child’s future can be an overwhelming task. Where do you begin? Who has the answers about the financial, legal, and Illinois Governmental complexities of the special needs' world? That is what the "PARENT to PARENT", “HEART to HEART” presentation is all about. Attorney Brian Rubin, for more than 29 of his 34 years in practice, has dedicated his career to special needs legal & future planning, because, he too, is a parent of a child with special needs. Brian’s son, Mitchell, now 30, has Autism. The presentation topics include: Government Benefits; Special Needs Trusts, Special Provisions in parents’ and extended family members’ Wills, Trusts, and Powers of Attorney; Choosing future Guardians and Trustees; Gifting by extended family and friends; Necessary provisions in order for Divorce Child Support, when there is an adult child with special needs; Adult Guardianship and the Alternatives; Guidance to “Future Team” (Trustees, Guardians, Care Providers, etc.); and Navigating the “MAZE” of the State Services “when the bus stops coming”. Presenter: Brian Rubin, Attorney & Father of a Son with Autism Genetic Testing 101: Advances, Advantages and Insights Genetic testing for most of the "RAS-opathies" is readily accessible. Find out the various approaches as to how testing is done, why a family should consider getting tested, and what can be learned from the testing. We'll also discuss the cross fertilization of ideas and insights that comes from a better understanding of the genetics of a related group of syndromes. Presenter: Eric Johnson, MD, PhD., Director, CLIA Laboratory Services, Transgenomic Molecular Diagnostics Laboratory, Omaha, Nebraska Benefit Help Solutions Government Benefits: The who, what, where, when, why and how of SSDI, SSA, SSI, Medicaid, Medicare, residential funding, day program funding, and related matters. Presenter: Sherri Schneider, President of Family Benefit Solutions, Inc. Overview of Assistive Technology Tools and Programs Hands on Exploration of assistive technology tools and programs in the areas of; reading, writing, math, organization, and communication. Items include tools that range from toddlers to high school level. The latest technology will be shown including all that you can do with the iPad to enhance your child's learning, socialization, and communication skills. Presenter: Kelly Key, Assistive Technology Coordinator, Barrington IL School District Sexuality: Helping your Children to Understand Sexuality This presentation will discuss the development of sexuality in childhood while focusing on ways to help children with developmental disabilities understand these issues. We will also discuss vulnerabilities to sexual exploitation. Presenter: Miriam Kalichman, MD Keeping Transition Planning and Services from falling through the cracks: Key Challenges for schools and parents A total shift in the IEP process and district responsibilities; 1. Goal of IDEA is to promote maximum independence in adulthood. 2. Goal of Transition planning is to address necessary goals to achieve maximum independence in adulthood. 3. Transition plan must address child’s interests, aptitudes, and plans regarding education, career, housing, and community involvement. Presenter: Matt Cohen, Esq. A DAY IN THE LIFE OF A CHILD WITH A VISUAL IMPAIRMENT This session will include simulations as to how a child might see with a variety of visual impairments. Accommodations/adaptations to help a child use his /her functional vision both at home and school will be discussed. What you should expect from your child’s school in regard to meeting his/her visual needs will also be addressed. Presenter: Karen Windy, Deaf-Blind Specialist/Early Interventionist/TVI, Illinois Medicines Commonly Used by Noonan Syndrome Patients This session will cover medicines most commonly used by patients with Noonan syndrome. Including guidelines for OTC medications. Presenter: Jeff Jasper, Ph.D. Jeff Jasper received his Ph.D. in pharmacology from UCSD “Our Story” This session will be presented by adults with Noonan syndrome. They will share their story – what is was like growing up with Noonan syndrome, and how Noonan syndrome affects their lives as adults. Presenter: Martha Goodwin and Darcie Robinson Adults with Noonan syndrome. |