Genetics can be confusing and overwhelming. VFN hast teamed up with professionals across VT and New England to bring you this short series of four videos that delivers important information that families may want to know about the world of genetics. If you are curious about genetics, have a child with a genetic condition or are expecting a child that has been prenatally diagnosed with a genetic condition, then this series is for you.
1. Click to Watch: The Mystery in Our Genes: Why We Are Who We Are (56 minutes)
Click to Complete: This SURVEY after you watch the recording – thank you!
This workshop is created to help people understand the role that genetics plays in the development of a human being and the maintenance of health. It explains why the consistency of the genetic code can be upset by changes that can affect health and development, and how these changes may be passed down to other generations, sometimes without the knowledge of the individuals inheriting them. Genetic testing and the tell-tale signs of genetic conditions are briefly reviewed as well. This is not designed to make anyone an expert, but rather to acquaint the participants with the basics of genetics.
Objectives:
1. To understand how a chemical code is used to write the instruction book of life
2. To understand why some features of parents are passed down to their children and some aren’t
3. To explore why and how genetic changes happen and how these changes may impact development and health
Presenter:
– Ed Kloza MS, CGC, Genetics consultant, New England Regional Genetics Network
Ed received his degree in Human Genetics and Genetic Counseling from Rutgers University, and has co-authored over 35 articles in the medical literature. He has extensive experience in genetic education of primary care clinicians and the general public. He is past president of the National Society of Genetic Counselors, and served on the editorial board of the Journal of Genetic Counseling. He co-founded the American Board of Genetic Counseling, and received the Natalie Weissberger Paul National Achievement Award in 2000.
Links:
- New England Regional Genetics Network website
- New England Regional Genetics Network contact email address: [email protected]
- National Genetics Education and Family Support Center
2. Click to Watch: Newborn Screening and the Early Hearing Detection and Intervention Program: What Families Need to Know (21 minutes)
Click to Complete: This SURVEY after you watch the recording – thank you!
This workshop will provide an overview of the Vermont Newborn Screening Program and the Early Hearing Detection and Intervention Program. Newborn screening includes testing a baby’s blood, hearing, and heart for health problems so they can be found and treated early. In addition to hearing screening the Early Hearing Detection and Intervention Program is responsible for care coordinating families through diagnosis of hearing loss and entrance into early intervention. Families will gain a better understanding of newborn screening results and if there is a need for follow up.
Presenters:
- Linda A. Hazard, Ed.D. CCC-A, Program Director for the Vermont Early Hearing Detection and Intervention Program
- Sydney Williamson-White, BSN, RN, Nurse Program Coordinator for the Vermont Newborn Screening Program
Links:
- Baby’s First Test
- Health Resources and Services Administration (HRSA)
- The Vermont Newborn Screening Program
- Say Yes to Early Intervention
- Vermont Hands & Voices
- National Center for Hearing Assessment and Management
- mailto:[email protected]
3. Click to Watch: VT Resources When Navigating the Confusing World of Genetics (34 minutes)
Click to Complete: This SURVEY after you watch the recording – thank you!
This workshop gives an overview of the resources that can be found in Vermont when families have questions related to genetics. She discusses services available around genetic counseling and testing, insurance considerations and where families can find support if their child is diagnosed (or not) with a genetic condition.
Presenter:
- Dr. Leah Burke, MD, Clinical Geneticist and Professor Emerita at the UVM Larner College of Medicine
Links:
- BCBS Genetic Testing Policy
- NORD National Organization for Rare Disorders
- NE Regional Genetic Network – Genetic Education Materials (GEMSS)
4. Click to Watch: Back to School Tips for Children with Special Health Needs/Disabilities (18 minutes)
Click to Complete: This SURVEY after you watch the recording – thank you!
What can you do to help your child start off their school year smoothly? Learn about some strategies, tools, and resources that you can use to successfully work with your school team to access the services and supports your child needs.
Presenters:
- Karen Price, VFN Co-Director of Family Support
- Kaitlyn Kodzis, State School Nurse Consultant with the Division of Maternal Child Health at the Vermont Department of Health
Links:
- Wrights Law
- Center for Appropriate Dispute Resolution in Education
- Center for Parent Information and Resources
- Office of Special Education Programs (OSEP)
- Federally-designated Parent Training and Information Center
- Federally-designated Family-to-Family Health Information Center
- Vermont chapter of Family Voices
- Vermont chapter of Parent-to-Parent USA