Listed below are highlights from the 2016 program:
This documentary film chronicles the creation of Courtney Bent’s experimental photography program at United Cerebral Palsy Watertown, MA.
Mr. Dietz is the curator and author of “Dads of Disability”. He has specific messages for genetic counseling trainees that he conveys through his personal experiences with special needs providers and the medical profession. He also chooses selections from this book and anecdotes that he has collected over the years in speaking with other fathers of children with special needs.
An engaging speaker and educator, Mr. Drazin speaks about the inspiration for and the genesis of his Changing Perspectives, Inc. educational program for elementary and middle school teachers centered on increasing awareness and inspiring empathy. Mr. Drazin also shares his personal stories growing up with craniofacial anomalies and the decisions he has made regarding medical procedures pertaining to Treacher-Collins.
This year we had the privilege of meeting parents of an older teenaged girl with Angelman syndrome, as well as a couple with a young girl with Argininosuccinic aciduria detected on newborn screen. By listening to the stories that parents share about their children and their family, and their relationship as a couple, we begin to capture a few key themes that tie their stories together.
We were joined this year by an engaging young adult with PKU, which provided us with their individual perspectives of living with a physical disability/genetic condition throughout the lifespan, and much like meeting with parents we capture universal themes of self-acceptance and resilience.
This year students worked through an actual prenatal case that posed a complex ethical challenge for a genetic counselor. The students analyzed the point of view of each stakeholder involved in the case while integrating essential information regarding prenatal diagnosis and screening learned in their classwork. The students worked through the case with the genetic counselor involved in the original case and through this exercise gained an appreciation of how, at times, it takes a village to handle challenging ethical issues.