Love can lead to great things. For Sharon Terry, the journey to discover the truth about a rare genetic disease that affects both of her children, pseudoxanthoma elasticum (PXE), starts with a powerful love for her children and expands to those impacted by the 7,000 rare diseases that exist. Worldwide, approximately 400 million people suffer from rare, often undiagnosed, diseases.
The 8th Annual Don Rix Distinguished Keynote Address is taking place today in Vancouver and Terry will be addressing a sold-out crowd. Terry’s talk will focus on the need for participation of all stakeholders in research and is titled: If you are not at the table, you are on the menu: Participatory science in health.
At this year’s keynote, Terry will tell the fascinating story of starting out as “just a mom” with no official credentials in the biomedical realm. Today she is a major player in the science advocacy and policy space for rare genetic disorders and has forged an important path to diagnose PXE. Over the past two decades she has led a landmark movement to address genetic conditions and brought this issue to the attention of President Barack Obama.
In the early stages of her children’s diagnosis, Terry observed that researchers were not sharing data outside their institutions which limited the knowledge of the disease to anyone on the outside. In 2000, Terry and her husband were able to break down these walls by discovering and patenting the gene responsible for PXE and making it freely available to others. They also created a diagnostic test.
“Like in any thriving industry, research participants have a role to play” says Terry, “The answer lies in all of us working together, sharing our data, our biological samples and ourselves.”
Terry leads Genetic Alliance as the President and CEO, a network of health advocacy, patient advocacy, research and health organizations. Terry has helped implement non-expert led endeavors and infrastructure that allows the participation of all stakeholders in research and advocates for patients’ rights to access their own data. Genetic Alliance’s message about data sharing and participants as partners was adopted by President Obama’s Precision Medicine Initiative. Terry is also the founding CEO of PXE International, a research advocacy organization for the genetic condition PXE. She serves in leadership roles for many collaborations focused on productively disrupting research and policy. Terry led the coalition that fought for the passage of the Genetic Information Nondiscrimination Act in the United States.
Genome BC is proud to present Sharon Terry to the Vancouver community. This will be her first major keynote talk in Vancouver after her popular TED Talk “Science didn’t understand my kids’ rare disease until I decided to study it” reached over one million people online.
NOTE TO EDITORS: Photos and limited interviews available; please contact Genome BC.