Alright – so today we’ve got the honor of introducing you to Sharon Terry. We think you’ll enjoy our conversation, we’ve shared it below.

Sharon, appreciate you joining 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.

Because of a number of situations in my life, I have taken quite a few big risks. When I look at most of them, I feel that though they felt significant at the time, they really weren’t among the biggest risks I’ve taken. Things like entering the convent, leaving the convent, homeschooling my kids, and learning to be a lifeguard so that they could have free swimming lessons  are all vastly diminished by two other risks I’ve taken.

The first of those came quite unexpectedly as a result of my children being diagnosed with a genetic disease called ‘oma’ of ‘pseudo xanthoma’ elasticum (PXE). I had been tracking what looked like odd bumps on the sides of my daughter’s neck for about two years between the time she was five and seven years old. In those years, my father and then my brother both died of two different kinds of cancers, and I was, in general, worried about my health and my family’s health. Doctors I took my kids to told me that it was all in my head and there was nothing wrong with the kids, so I followed their suggestion that I put myself into therapy. I’m happy I was in therapy because then when the kids were diagnosed, I had support for digesting the reality. I did find a dermatologist who would listen to me. He took one look at my daughter and said, “she has pseudoxanthoma elasticum”. He turned off the lights and looked into her eyes, which felt very strange to me since he was a dermatologist. The ‘oma’ of ‘pseudo xanthoma’ also terrified me since it sounded like cancer to my untrained ears. After he put the lights back on, he looked at my son and said, “Oh look, he has it too”.

In one afternoon, I crossed a very big line, one that would lead me to taking a lot of risks, but one that was grounded in this big risk my children were facing. This disease, called PXE for short, was understudied and poorly understood. So, what I found in my searches (pre internet) was terrifying. Everything said my kids would die by the time they were 30 years old and that they would be visionless and have the skin of a 90-year-old by that time.

I was very fortunate that the doctor who diagnosed them, this dermatologist Lionel Bercovitch, had once been an ophthalmologist and lived only three houses from us. We were able to meet with him on Christmas Eve 1994 so that he could describe what he knew about the disease, which was almost nothing. Thank goodness he was a good sport and came on a very long journey that is still continuing with us.

In terror that something terrible was happening to our kids, we first bought them every toy they wanted, and then we set to work trying to understand what we could about this disease. I was a docent at the local Audubon Society (like lifeguarding, another good way to get my kids free nature classes) and met a researcher there who had lab and freezer space that we could borrow, so I set about trying to find other people with PXE, collecting their blood and tissue, and searching for the gene. The kids were thrilled when we moved the various body specimens we were collecting from our freezer at home, and there was more space for the ice cream and no more gallbladders to look at there. Using my master’s in theology (not!), and working between 10:00 PM and 2:00 AM, my now ex-husband and I found the gene for PXE. We created a genetic test so people could be tested, and we brought together a consortium of researchers that continues to this day. After seeing certain aspects of my father and brother’s care badly done, their experience not respected, and information that could have helped others not captured, I wanted to make sure this experience was different. So, I quickly became involved with Genetic Alliance, which had been founded many years before and was working to enable advocacy organizations to do more.

I took over the leadership of Genetic Alliance as the CEO in 2004 and have remained in that position since. Iin my work with Genetic Alliance, I have built the first lay led biobanks, registries, institutional review board, and a whole host of other tools that help parents, families, advocacy groups, and unstructured communities like Facebook groups, catalyze, initiate, and conduct research on their disease. We were doing what is now called citizen science well before it had a name in the medical field. However, I certainly experienced it over and over as Audubon staff because we were using citizen scientists for our bird counts and many other aspects of the natural world work.

I feel this was risky because I came to it with my master’s in theology with no right to enter the hallowed halls of science. I entered and demanded to not only sit at the tables but establish the tables, decide who would be invited as guests, and determine the menu. Many times, I was thrown out of rooms or talked down to. But I believed strongly in what we were doing, and there’s nothing like a mother’s love for her children. Nothing really mattered, and each risk, although I would hold my breath before I plunged in, was taken with some degree of joy and excitement.

The other time in my life that I took a big risk came years after that, in 2015. I’m an Ashoka fellow, a social entrepreneur supported by a network that believes that social entrepreneurs have a lot to offer the world. It’s wonderful to be an Ashoka fellow, and they offered me an opportunity to do inner work and support my inner life in 2015. This took the form of three week long retreats and many monthly meetings over 18 months. part of this that felt risky was to return somewhat to my roots where I had spent a good deal of time in inner reflection so many years before, and to do it in a way that was gentle and compassionate with myself. Articulating my choices and my values and recognizing mye as the expert of my experience. 

This was wholly resonant with my work in the health advocacy world. I immediately fell in love with the process used in this program, called Gestalt Awareness Practice (GAP) and with the facilitator and founder of this practice. I began to really dive into many of my own patterns, the way I showed up in the world, and a lot of other really painful pieces of my early life that I had not shown light on in this way. This felt very risky and vulnerable, but the way Christine Price, the facilitator, engaged us felt very safe and worth the risk. I quickly consumed everything she had to offer in writing, in 1:1 sessions, and eventually in thousands of videos she had saved over the years. I learned by a kind of transmission in an apprenticeship model how to also share GAP with others, and now lead workshops and do one-on-one sessions for individuals. 

I merge the two worlds by bringing GAP into my world of health advocacy. My staff, our board, and other advocates have engaged in this process in greater or lesser degrees and found it useful as well. I’m now working with Chris Price and her colleague Dorothy Charles to build the Gestalt Practice Library and Resource Center, a nonprofit dedicated to preserving this work in the world primarily through giving access to its history, its roots, and its branches. I digitized 10s of thousands of VHS and cassette tapes for the foundation for this library, and I’m very excited to be working on it.

Both these endeavors feel risky in the right sense of the word. I like what the Buddhist nun Pema Chodron says about risk when she actually draws a diagram of three concentric circles. I can stay in the inner circle – the comfort zone – and not grow. Or I can go way outside it into the third outer circle – a place that’s beyond risk and is a kind of forcing and unsafe place to be. But there’s a place in between that’s a stretch that does involve some risk, and it’s well worth traversing that “in between” layer. Both the experiences I describe here have helped me to know that unless we take risks, unless we go beyond where we’re comfortable, unless we move into the places we fear, we aren’t going to be able to make a difference in the world in the way that we want to. I’ve been extremely fortunate in being very supported in both aspects of my work, and I look forward to whatever it brings each day. I do wake up thinking, “bring it!” I am delighted that my work continues to include my children, who are now adults. Both have surpassed me in their brilliance in transforming systems and enabling a kind of awareness we all need, to see that people are at the center in a transformative way when we recognize it. It’s not that we allow or impart power to others. It’s that we stand up and recognize it. Their capacity in both a technical sense and a personal sense is phenomenal, and I am in awe to be their partner.

Awesome – so before we get into the rest of our questions, can you briefly introduce yourself to our readers.

I have said a lot of that in the prior passage.

The biggest problems I aim to solve is how to bring what we have achieved in ride sharing, and music sharing into health and biomedical research? How do we leave behind the old entrenched patriarchal models? How do we move whole institutions that are centuries old to a place where they will partner with us – follow OUR lead? I speak of universities, biopharma companies, and government agencies.

I am proud to have led the coalition that got the Genetic Information Nondiscrimination Act passed. I am proud of my two kids and how they have surpassed me in their intelligence and capacity to effect change in the world.

In a practical way, Genetic Alliance has built tools galore – diseaseinfosearch.org, trustortrash.org, doesitruninthefamily.org, ihopegenetichealth.org, and so on. Each of these is a wonderful resource for those who wish to initiate and conduct research on their condition – using our registry, biobank, IRB, and community organizing solutions.

I am also personally very happy to have Gestalt Awareness Practice as part of my work in the world. For me, the balance of the inner and outer is wonderful for the ground it offers me and others. My world in genetic disease advocacy is filled with suffering. I can offer a little support to those who suffer through my GAP work and alleviate a little of their burden, teaching them tools that are portable and endure.

Between these two “jobs” which feel much more like a vocation to me, I know who I work for – what bigger mission I am delighted to participate in.

Do you have any insights you can share related to maintaining high team morale?

I think managing a team is primarily about finding what connects each person to the north star, their core to the mission, and nurturing that. I find giving time to this is as critical as the day-to-day operations. I firmly believe that each person must first find their plug into support, like an electric car. What supports me? How will I get that every day? When something gets scary, or rocky, or rough, can I first find my supports and take a breath and then go into whatever needs my attention?.

If I work first on myself, then working with the team is not so hard. Morale can only be maintained by each person knowing they are in the right seat and wanting to stay there – not because they are afraid, but because they know fears and can gently turn toward them with love and support. They can remember they are the expert of their own experience.

Let’s talk about resilience next – do you have a story you can share with us?

I think my greatest experience of resilience is of late. The pandemic was rough on nonprofits. We lost a lot of funding. The ecosystems contracted.

I undertook a new program right at the start of the pandemic, called iHope Genetic Health. Its mission is to diagnose the world’s undiagnosed, particularly children, in low to middle income countries and communities. A huge mission. I figured, with a wonderful donation of instruments and reagents necessary to do clinical whole genome sequencing, that donations for the infrastructure would pour in. They did not. High net worth individuals were interested in funding a specific disease, but not a diagnosis for ANY disease. Pharma company foundations were interested in funding diagnosis for just the diseases in their pipelines. This was shocking to me. We live in a world where it is now possible to diagnose millions of babies and children who suffer enormously. In more than half the cases, these kids (and some adults) can have a beneficial change in their management and care.

Resilience or some sort of obstinance has helped me to stay a course. I took a huge pay cut, sometimes to zero, I let go of our physical office space, I asked staff to make sacrifices (though always less than mine), and I faced the amazing fact that after leading for almost 30 years, bringing in $40M in funding, managing a staff of 25, and volunteer interns 20 at a time, I did not know the solution for our conundrum. There came a point where I said to our Council (board), I do not know where the solution will come from. I will be surprised, it will not be fashioned by me. I will till the soil, and plant the seeds, but I have no crystal ball this time.

I still do not know the whole answer. A recent grant has put fuel in our tank, many genetic testing labs have stepped up to donate their services, and dozens of clinicians have volunteered. Even various federal agencies are beginning to think hard about how to implement iHope Genetic Health on a large scale in the world.

Somehow, I was not afraid. I credit my GAP work with that to a large degree. This is not in my hands, I can do my best, and the rest is not something I can take pride of ownership in. What will be will be. I am grateful for my resilience as we rode through this. It will be the most impactful offering I will make in the health advocacy world. I am grateful to be here now.

Contact Info:

• Website: geneticalliance.org, pxe.org, sharonterry.com, tribalground.com
• Facebook: https://www.facebook.com/sharonterry
• Linkedin: https://www.linkedin.com/in/sharonterry/
• Twitter: @sharonfterry
• Youtube: https://www.youtube.com/geneticalliance
• Other: My son’s amazing products – https://aretetic.com/aretetic-products; my TED talk – https://www.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it

Image Credits
Diane Baker