If you have heard GSF board member, Stephanie Meredith, share her research on the experiences of patients and families who have received a prenatal or postnatal diagnosis of Down syndrome, you will be familiar with the term “flashbulb memory”. The term flashbulb memory was introduced to describe memories of emotionally charged, traumatic or surprising events …
By Katie Stoll The Polygenic Embryo ELSI Research “PEER Group”, an NHGRI-funded research consortium that aims to build an initial framework for the consideration of the ethical, legal, and social implications (ELSI) of Polygenic Embryo Screening (PES), recently hosted a conference titled, Ready or Not? The Science and Ethics of Polygenic Embryo Screening. I was …
Polygenic Embryo Screening: Genetic Counseling Perspectives and Commercial Incentives Read More »
By Deborah Westover, MSN, RN, CNL, CNRN & Rachel Westman, MS, CGC Dementia is a generic term commonly used to describe a decline in a person’s cognitive functioning, such as changes in their memory, judgment, or reasoning. Dementia is an umbrella term, meaning it covers a broad category of disorders that affect the brain. Dementia …
By Devin Shuman (she/her) Living life as a genetic counselor with mitochondrial disease may appear to mostly involve taking selfies with mitochondria jewelry and plushies from etsy. And while that might be a defining part of my rare disease lived experience, there are three current news stories that highlight the darker side of my rare …
Mitochondrial Disease in the News; the darker reality of living with a rare disease Read More »
Photo credit Jill Martin Instagram A couple weeks ago, I received a message in a group text chat with friends and patient advocates. Janet wrote, “Jill Martin is sharing our message of inheriting mutations from our fathers!” Her sister Eileen shared, “I just watched it. It really touches home.” Jill Martin, lifestyle contributor of the …
By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC Okay, so we now are all well aware that there is endless perpetuation of LGBTQIA+ Discrimination in the ASRM recommendations. Time for another hard truth – the guidelines also discriminate against people who have disabilities, genetic conditions, and/or are neurodiverse. When we hear the term …
By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC Hopefully after reading part one of our new series, LQBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation, you’ve reviewed the ASRM recommendations and realized that their failure at inclusivity extends far beyond their discriminatory practices …
We are pleased to highlight board member, Dr. Cobie Whitten, who brings her experience and passion as a patient advocate to the Genetic Support Foundation. For more than 30 years, Cobie Whitten has worked tirelessly to support patients facing a cancer diagnosis and improve survivorship services for those patients and their families at all points …
By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC Have any of y’all read the most recent American Society for Reproductive Medicine (ASRM) recommendations for gamete and embryo donation lately? Probably not if you don’t work in ART (assisted reproductive technology). It’s a bit painful, particularly if you comb through it with a JEDI …
Hello friends of Genetic Support Foundation (GSF)! We hope your 2023 is off to a great start! As we move more fully into this new year we mark 2022 as a milestone and are reflecting on all that we have achieved over the past decade. The year 2022 was the 10th anniversary of GSF’s founding. …
