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 I was invited to participate in a conference Ready or Not? The Science and Ethics of Polygenic Embryo Screening.The conference was hosted by 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) …
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 »
We are pleased to highlight board member Jessie Conta, who brings her expertise in genetic counseling, patient advocacy and lab stewardship to Genetic Support Foundation. The post Jessie Conta: Laboratory Stewardship Advocate Guides GSF Forward appeared first on Gene Cuisine: satisfying your appetite for genetic news and information.
By Jenny Rietzler, MS, CGC In my first year as a reproductive genetic counselor, I had a case that I still reflect on to this day. Without sharing too many specifics, my patient had gone through IVF and she and her partner had decided to have pre-implantation genetic testing for aneuploidy (PGT-A) on their embryos. …
The Balancing Act of Pre-implantation Genetic Testing for Aneuploidy Read More »
by Katie Stoll 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 …
PLUGS stands for – Patient-centered Laboratory Utilization Guidance Services. PLUGS is housed at the Seattle Children’s Hospital and consists of a network of experts and people who care about lab stewardship from organizations throughout the county. The mission of PLUGS is to improve laboratory test access, ordering, retrieval, interpretation and reimbursement. Genetic Support Foundation (GSF) …
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 …
An important priority for Genetic Support Foundation (GSF) is to develop and share educational resources about genetics and health that include up-to-date, fact-based information that is free of commercial bias. With this in mind, GSF has developed numerous helpful videos related to genetics and health, all of which can be viewed on our website. Many …
Educational Videos to Support Informed Patient Decisions Read More »
