By Stephanie Meredith, MA, DrPH and Viviane Polarson, MS, CGC A recent viral video posted by a popular YouTuber with more than five million followers has brought renewed attention to a topic that genetic counselors, medical professionals, and Down syndrome advocacy organizations care deeply about: the quality of information available to pregnant patients at the …
We are pleased to announce that the Genetic Support Foundation (GSF) has been approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support a new project titled “Convening to Identify Patient-Centered CER Priorities of Individuals with Achondroplasia and Families.” …
Contributing authors: Andrea Schelhaas, Cruzanne Macalligan, and Colleen Gioffreda When you learn your child has dwarfism, it’s natural to have many questions. That curiosity is a great thing – it’s part of how we learn and grow as parents. The good news is you’re not alone in any of this. The dwarfism community is open, …
We’re excited to share the remarkable progress made during year two of our multi-year HRSA Healthy Tomorrows Partnership for Children Program (HTPCP) grant, which funds our continued efforts to expand access to genetic healthcare across the Pacific Northwest. Expanded Patient Care and Community Impact This past year marked significant growth in our ability to serve …
By Devin Shuman, CGC (she/her) and Andrea Schelhaas, CGC (she/her) *Of note, we purposefully use capital D in Disabled and capital A in Autistic in this text as individuals who embrace disability as a core part of our identities and who are part of the larger Disability community advocating for disability rights and equality. Today, …
Who Defines “Health” and What Purpose Does Its Definition Serve? Read More »
Part 4: Snipping Away “The Unfit” Read on for the final part of our series tracking the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a dystopian future. For early …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 3: Stitching the Values of Our Future Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a dystopian future. As …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 2: Weaving Together Unlikely Allies in Defense of Good Parenting Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 1: The Threads of 20th Century Eugenics Interwoven with Modern Pronatalism Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
By Andrea Schelhaas, Stephanie Meredith and Katie Stoll In November 2021 under the Accelerated Approval Program, the U.S. Food and Drug Administration announced approval of Voxzogo (vosoritide), a drug developed by BioMarin for the purpose of increasing linear growth in children with achondroplasia with open growth plates (individuals who are actively growing). Achondroplasia is the …
Pharma’s Role in Practice Guideline Development: Achondroplasia as a Case Study Read More »
