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Advocacy

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The Diagnosis Moment

ART 2

Polygenic Embryo Screening: Genetic Counseling Perspectives and Commercial Incentives

Sept 2023 Newsletter Alzheimer Disease (1)

Dementia, Drugs, and DNA

dark mitochondria

Mitochondrial Disease in the News; the darker reality of living with a rare disease

Martin

BRCA2 on the TODAY Show: Jill Martin’s Story

blog 6-27

Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series

Advocacy

Polygenic Embryo Screening: Genetic Counseling Perspectives and Commercial Incentives

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 …

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Mitochondrial Disease in the News; the darker reality of living with a rare disease

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 …

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BRCA2 on the TODAY Show: Jill Martin’s Story

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 …

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Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series

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 …

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LGBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: Series 2: Nod towards Cisgender, Heterosexual couples

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 …

LGBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: Series 2: Nod towards Cisgender, Heterosexual couples Read More »

Cobie Whitten: A Tireless Advocate for Supporting Cancer Patients Brings Her Passion for Understanding the Psycho-Emotional Impacts of Health to GSF

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 …

Cobie Whitten: A Tireless Advocate for Supporting Cancer Patients Brings Her Passion for Understanding the Psycho-Emotional Impacts of Health to GSF Read More »

LGBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series

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 …

LGBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series Read More »