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Early-Onset Parent Roundtable – Sharon Terry: mom, advocate, change-maker

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Event Series Event Series: Early-Onset Parent Roundtable

Jun 20, 2023 @ 7:00 pm - 8:00 pm

Early-Onset Parents Roundtable

8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT

Genetic Alliance logoJoin us for a conversation with Sharon F. Terry, President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products and tools for ordinary people to take charge of their health and to further biomedical research.

As ‘just a Mom’ with a master’s degree in Theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to that diagnosis in her two children in 1994. She is a co-discoverer of the ABCC6 gene. She subsequently developed a diagnostic test and conducts clinical trials. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies. Her story is the topic of her TED Talk and TED Radio Hour.

Sharon Terry, mom and advocate, TED Talk

Sharon serves in a leadership role on many of the major international and national organizations, including co-founding the NAM Roundtable on Genomics and Precision Health and the International Rare Disease Research Consortium Executive Committee. Terry is the founder of the Genetic Alliance Registry and Biobank and IRB. She is on the editorial boards of several journals. She led the coalition that was instrumental in the passage of the Genetic Information Nondiscrimination Act. She received an honorary doctorate from Iona College for her community engagement work; the Research!America Distinguished Organization Advocacy Award; and the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy. She was named one of FDA’s “30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act”. She was named a National Associate of the National Research Council, National Academies of Engineering, Sciences, and Medicine for extraordinary service; and received the American Society of Human Genetics Advocacy Award in 2021. Terry is an Ashoka Fellow.


Join our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will have plenty of time for parents to exchange ideas and ask/answer questions from other parents.

  • Once you join the group by submitting your RSVP for a meeting, you will not need to register for each month’s meeting. You will automatically receive monthly reminders and call-in/Zoom information. If you participated in one of our meetings in 2022, you are automatically a part of the group and do not need to register again. You may change your group membership at any time by emailing us at info@fshdsociety.org

Ally Roets & Sam Ray
Early-Onset Chapter Directors

Learn more about the Early-Onset FSHD Chapter: FSHDSociety.org/Early-onset-chapter