Suzanne B. Robotti
Robotti’s mother, like millions of other women in the 1950s and 1960s took the prescription drug DES (diethylstilbestrol), which was thought to prevent future miscarriages. The drug was widely used despite earlier publication of a study that linked DES to reproductive organ malformation and even cancer. DES was eventually taken off the market in 1971. When Robotti reached childbearing age herself, she discovered she was infertile due to DES exposure. This prompted her to join DES Action, a patient advocacy group.
In 2010, her son’s physician prescribed Ritalin for his ADD, but was unable to explain the medication’s side effects. Robotti was concerned about the long-term effects of this stimulant on her son’s developing brain.
In 2014, MedShadow Foundation acquired DES Action USA, a nonprofit advocacy organization that provides information and educational resources to individuals exposed to the harmful drug diethylstilbestrol (DES).
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Tara Haelle is a freelance science and multimedia journalist who specializes in writing about women’s health, prenatal health, vaccines, infectious disease, pediatrics, endocrinology, immunology and other areas of medicine as well as marine biology and environmental science. She is a Forbes contributor whose work also appears in NPR, Scientific American, Politico, Medscape, and elsewhere. She cowrote The Informed Parent: A Science-Based Guide to the First Four Years and blogs about reporting on medical research for the Association of Health Care Journalists.
Tara also blogs about evidence-based parenting at Red Wine & Applesauce and writes children’s science books. She draws on her years as a high school teacher, test prep tutor and college adjunct instructor to inform the way she writes about science and to explain complex ideas in accessible prose or in public talks, such as https://www.youtube.com/watch?v=ggtkzkoI3eM. She holds a master’s in photojournalism from the University of Texas at Austin, and her photography has appeared in various regional and national publications. You can follow her on Facebook and Twitter.
Karen Calechman is a DES daughter. She was the catalyst for the DES Symposiums held at Mount Holyoke College (her alma mater and one of the Seven Sister Colleges), and at Boston University in 2017. When Smith College (another of the Seven Sister Colleges) acquired the DES Action Archives, Karen became determined to educate the current generation of students (who may be 3rd generation DES exposure effected) and faculty about DES.
Karen was a certified teacher with many years of experience in education, educational outreach and sales. She was a top selling consultant for McGraw-Hill publishers in their education titles. Karen used her education expertise for Wesleyan University (Program to Increase Mastery in Math and Science) to create and coordinate continuing education workshops for teachers in a renewable energy curriculum, and teaching methods. She also edited this curriculum and the associated books for young students.
Karen became interested in medical education when she was the program manager of Project ECHO LA, (Extension for Community Healthcare Outcomes) for LA Net, a practice based research network that worked with community healthcare clinics and doctors.
Karen was a natural fit to work with DES Action educational outreach, resource and phone support. She is passionate about helping others (both those exposed and the unexposed) learn about DES exposure and its effects.
Leading DES Action’s online presence and user experience, Deirdre Wyeth has nearly two decades as a digital strategist. She oversees search engine optimization and identifies partnership and alliance opportunities as a means of connecting to a larger audience. Deirdre started working on the web for large media companies in the 1990s, including TV Guide.com, where she was Managing Editor and co-Executive Editor, and Time Inc. where she was an Executive Producer, Interactive, and Director, Site Content and Production at Parenting.com. There, she led her team to winning the MIN Award for Best Interactive Newsletters. Earlier, she was a print editor with TV Guide, Entertainment Weekly and Video Review, where she became the first woman to run a US consumer electronics publication.
Deirdre has served on the board of New York Women in Communications (NYWICI) and received numerous industry honors including the New York Women’s Agenda 2014 Galaxy Award and NYWICI 2012 Distinguished Service Award.
Pat Cody – DES Action VOICE Editor (9/14/1923 – 9/30/2010)
We will always remember Pat Cody, DES Mother and co-founder of DES Action USA. She worked as Program Director from 1978 – 2004. Her years there saw passage of Congressional funding for DES research, creation of our quarterly newsletter DES Action VOICE, and assistance in setting up DES groups in the Netherlands, Australia, Canada, France, England and Ireland. But Pat was so much more. She wasn’t the loudest voice in the room but she usually was the wisest. Pat knew how to get things done and you could never say “no” to Pat. She kept DES Action USA on a steady course and her spirit guides us still. Thank you, Pat!
Michael Freilick – Former President (9/16/1953 – 7/6/2011)
Sadly, Michael died of a heart attack – unrelated to DES.
Michael was a health educator by choice. As a DES Son who had surgery for testicular cancer at age 29 he learned that men, and especially young men, need to pay more attention to their health. He wanted to alert them, and spoke out where ever and whenever he could. His message was simple. Start doing testicular exams as a teenager. Michael used his experiences to show how early detection prolonged his life for decades. Michael, and his wife Carol, are the adoptive parents of their daughter, Michelle.