We were lucky to catch up with Sharon Terry recently and have shared our conversation below.

Sharon, thanks for taking the time to share your stories with us today We’d love to hear the backstory behind a risk you’ve taken – whether big or small, walk us through what it was like and how it ultimately turned out.

My children were diagnosed with a rare genetic condition in 1994. Everywhere I looked for any answers about what this would mean for them was baron. There were no answers. I was a stay at home mom, with no medical training or experience. The risk I took was to step into the biomedical research arena without a shred of credibility, no credentials. I stood up to researchers and policy makers who said I had no right to be in their hallowed spaces. I pushed a research agenda that would focus on the needs of people living with pseudoxanthoma elasticum (PXE). We borrowed lab space and found the gene for PXE in 1999, not even really knowing what a gene was.

I quickly discovered that what was true for this one disease was true for all 7000 rare diseases. I risked taking a large chunk of time away from my kid’s disease to expand what I had done for one disease to all diseases. I scaled and commoditized various tools and resources: registries, biobanks, study platforms, protocols, and so on. With my masters in religious studies I went to all of the offices on Capitol Hill with an army of other Moms and Dads and got the Genetic Information Nondiscrimination Act passed as a federal law. I didn’t even know how a bill becomes a law when I started.

And then I risked even further. After having postured and posed as “one of them”, whether on the Hill or in the lab, I stepped back into my own skin, and risked coming from my core – as a mom, as a scared human, as a fellow traveler with the millions who suffer. I risked admitting I was afraid, that I didn’t know, that I wasn’t sure. I gave up following the “professional facade” track I thought I needed to follow to be taken seriously. I risk being fully present.

Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers

I got into health advocacy because my two kids were diagnosed almost 30 years ago with a rare genetic condition. I founded an advocacy organization for their condition – PXE International. Shortly after founding PXE International, I began to work with an umbrella organization – Genetic Alliance. Genetic Alliance is a coalition of thousands of health advocacy organizations. We are a collaborative of very large organizations and very small ones. Everyone works together to create better systems to provide care to people suffering from any genetic condition. I have been the CEO of Genetic Alliance for almost 20 years.

PXE International provides support to individuals with pseudoxanthoma elasticum (PXE). We also provide education for clinicians (how can they know about 7000 rare diseases, we like to give them a break!). And we drive research – basic and translational – on the disease. Because of PXE International, we have three potential treatments in clinical trials right now.

At Genetic Alliance, we are about putting people in the center for biomedical and health services and research. That might sound like a no-brainer, but the current healthcare systems and especially the biomedical research paradym do not focus on people, on patients. It is the only industry that never considers them in deciding what to offer, how to offer it, and how to make access to it easy. And so our work is very simple and an uphill battle at the same time. We convene groups of stakeholders to listen to each other. We work with partners, such as LunaDNA, to solicit what people really care about as they receive services. Imagine any other part of our lives not offering evening and weekend appointments for important services? And if the average citizen of the world knew that researchers hoard data for decades rather than sharing everything they can to accelerate discovery of treatments for diseases, wouldn’t they be appalled and demand something different? Demand sharing for the sake of eradicating disease, how about?

Genetic Alliance works on the policy level internationally to build systems where this sharing can occur. We show up at tables (even uninvited) to ask the hard questions about how incentives can be changed to align with the public good. At present, researchers are rewarded for competition, for keeping secrets. Researchers receive large grants for their work if they are first in a discovery, if they are not sharing their advances as they are uncovered, but waiting to publish them – often with very long timelines. COVID proved our point – discoveries can be quicker, and development of tests and therapies lightening quick, if we figure out ways to reward these behaviors.

We create tools that communities can use to become the researchers we need. We are not waiting for a change in culture in biomedical research worldwide. We convene researchers (sometimes smart girl scouts, who needs a PhD?) and create the open systems we need to pool the intelligence, the resources and the data to get to interventions and therapies more quickly.

And access to these discoveries, these therapies? Should they be only available to those living in high income countries and communities? We work to bring them to low to middle income countries and communities.

Concretely, here are a few of our many offerings:
Disease InfoSearch – a place to look up any one of the 10,000 conditions and learn about support, clinical trials, and research.
Advocacy Atlas – you’ve been newly diagnosed, or your child has – come here to navigate the many aspects of a new diagnosis from education to health services.
Navigating the Ecosystem of Translational Science (NETS) – how can anyone make sense out of the pathway from being diagnosed to receiving a treatment? We offer you a detailed map in all of the steps that must be taken to develop a treatment for a disease.
Registries and studies – with our partner, LunaDNA.com, we have developed system to help bring your community together to answer the questions that matter to you most, not the ones that researchers have chosen to answer without your input. We have hundreds of pre-made surveys, templates, and even our own Institutional Review Board.
iHope Genetic Health – we are working in communities that are under-resourced to diagnose the world’s undiagnosed. These are mostly children living in low to middle income countries and communities who do not have access to genetic testing.

We are particularly interested in empowering the underserved, the marginalized, those who don’t have access to what they need to be healthier.

Putting training and knowledge aside, what else do you think really matters in terms of succeeding in your field?

Humility is most important. Fueled by recognition of my fears – knowing they are there, and that I am only going to succeed if I face them and recognize them. I sit with them and come to know them. Some I even befriend. This combination of knowing that I don’t know, and recognizing I am afraid, allows me to move forward and take the risks that are critical for my work in the world. If those who suffer risk their lives every day, the least I can do is risk my reputation, my comfort, my preconceived notions.

Are there any books, videos, essays or other resources that have significantly impacted your management and entrepreneurial thinking and philosophy?

My entrepreneurial thinking and management has been most influenced by something called Gestalt Awareness Practice (GAP). As a Ashoka Social Entrepreneur Fellow, I was given a special opportunity to be part of their Wellbeing Program. In it, I met GAP and the woman who created it, Christine Price.

GAP has allowed me to put down my crusader flag and open myself to possibilities that I would not have seen otherwise. It has given me the tools to show up with vulnerability and compassion. It has opened me to new possibilities, and allowed me to gently move from my patterned defensive behaviors to an openness I love.

In practical terms, this means that when I am fighting the status quo, instead of adopting their ways of defensiveness, top-down, patriarchical tactics, I can come with openness. I can first find my ground and support, and move from that basis. I can offer my thoughts, and ideas, and listen, deeply listen. I get my power not by opposing, but by moving with. The basic tenants of this process, are to trust process, follow process, and get out of the way. I find that when I do that, I work in a way that is much more aligned with my values and leave space for others to discover theirs.

Contact Info:

• Website: sharonterry.com
• Facebook: https://www.facebook.com/sharonterry
• Linkedin: https://www.linkedin.com/in/sharonterry/
• Twitter: @sharonfterry
• Other: geneticalliance.org diseaseinfosearch.org ihopegenetichealth.org lunadna.com esperare.org tribalground.com