About Me

About Me

I am passionate and energetic. I love life and have a tremendous desire to alleviate suffering. I am learning to be more deeply present to myself, my loved ones, and the people I serve. I am opening more to multiple levels of experience – inner and outer. I am giving each experience more time and space.

I have been an entrepreneur all of my life. As early as I could remember, I sought creative solutions to problems. Some of this was related to a challenging home life, in which I refined certain talents for managing the complex interactions of my family, to put it mildly. Some of it was related to an innate scrappiness, an ability to take something and find a way to related to it so it works better. That could be a ‘fix-it-upper’ house, building a car out of junk yard parts, or my kids’ diagnosis when it came in 1994. You can read more about that here and here, or watch my TEDMED video.

These days, I still have great passion for the nonprofit for the kids’ condition, pseudoxanthoma elasticum (PXE), PXE International, and my major work in the world at Genetic Alliance. Even more these days, I love my daughter and son and their wives, my 2 and half year old granddaugther, traveling, running, and learning. Sheltering in place with my daughter and her wife means countless wonderful evenings of good humor, good eating, and the joy of being together. I love seeing my son and his wife and Maya, though they live in San Diego and that is not possible now. Thank goodness for Zoom.

I am also very engaged in Gestalt Awareness Practice. This gentle form of being present, with an open heart and open mind, has opened me to many more choices and much more energy. I love the intrapersonal exploration, meditation, and the company of others seeking to be aware and be mindful. I have become a student and facilitator of the practice.

In the day to day, I am President and CEO of Genetic Alliance, which seeks to find a place for the lived experience of the people who suffer from illness and disease in the biomedical research and services enterprises. 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, I cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in my two children in 1994.  I am a co-discoverer of the ABCC6 gene, and patented it to ensure ethical stewardship in 2000, assigning my rights to the foundation.  I subsequently developed a diagnostic test and conduct clinical trials.  I am the author of >200 peer-reviewed papers, of which 30 are clinical PXE studies. This story is the topic of my TED Talk and TED Radio Hour.

In my focus at the forefront of consumer participation in genetic research, services and policy, I serve in a leadership role on many of the major international and national organizations, including the Precision Medicine Initiative Cohort Advisory Panel; Accelerating Medicines Partnership; National Academy of Medicine Roundtable on Genomics and Precision Health; the PhenX scientific advisory board; the Global Alliance for Genomics and Health; the International Rare Disease Research Consortium Executive Committee; Genome Medical; LunaDNA; and as Founding President of EspeRare Foundation of Geneva, Switzerland. Terry is co-founder of the Genetic Alliance Registry and Biobank.  I am on the editorial boards of several journals, including Genome, Patient Engagement Editor for Genetic Alliance’s official journal Genetic Testing and Molecular Biomarkers, Chief Patient Advisor for Clinical and Translational Science. She led the coalition that was instrumental in the passage of the Genetic Information Nondiscrimination Act. I received an honorary doctorate from Iona College for my community engagement work in 2006; the 2011 Research!America Distinguished Organization Advocacy Award and an inaugural member of Disruptive Women in Health Care in 2009; and the Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy in 2011. I was named one of FDA’s “30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act” in 2013. I am co-inventor of the Promise for Engaging Everyone Responsibly (PEER), receiving a large grant from the Robert Wood Johnson Foundation in 2014.  PEER undergirds the Community Engaged Network for All (CENA), a PCORnet member since 2013. I was Co-PI of the PCORnet Coordinating Center and Chair of the PCORnet Engagement Committee. I was a member of the Blue Ribbon Panel’s Working Group on Enhanced Data Sharing for the Cancer Moonshot. I was named a National Associate of the National Research Council, National Academies of Engineering, Sciences, and Medicine for my extraordinary service. I received the Health 2.0 Health Activist award in 2016. In 2017, I co-founded the People Centered Research Foundation. In 2019, I won the Luminary Award from the Precision Medicine World Conference.

I am delighted to be given many opportunities to influence the healthcare system. I often comment that I am just a ‘tweaker’, I have not created the revolution I hope to catalyze. And, perhaps I have moved the needle enough for the next round of advocates to catapult!

Honors and Awards
2005      Honorary Doctorate for community engagement, Iona College
2007      1st Annual Patient Service Award, UNC Institute for Pharmacogenomics and Individualized Therapy
2009      Inaugural Disruptive Woman in Health Care
2009      Elected Ashoka Fellow
2010      Research!America’s 2011 Paul G. Rogers Distinguished Organization Advocacy Award
2011      Clinical Research Forum’s Public Advocacy Award
2012      Spirit of Empowerment Advocacy Award, Facing Our Risk of Cancer Empowered
2012      Honorary Professorship, Hebei United University, Tangshan, China
2012      Collaborate|Activate Innovation Challenge First Prize Award for Platform for Engaging Everyone Responsibly (PEER)
2013      Ashoka Changemakers First Prize for PEER
2013      Forbes Best Business Model for Transforming Health Systems for PEER
2013      FDA Hero for the 30th Anniversary of the Orphan Drug Act
2014      Women of Impact, Robert Wood Johnson Foundation
2015      Robert Wood Johnson Foundation Pioneer Award
2016      National Associate, National Research Council
2016      Health 2.0 Activist Award

2016    TedMed Talk (>1M views) and TED Radio Hour

2019    Luminary Award from the Precision Medicine World Conference