RARE Daily

Rare Leader: Kim Nye, President, TESS Research Foundation

November 5, 2020

The Basics
Name: Kim Nye

Title: Founder and President

Organization: TESS Research Foundation

Social Media Links:

Disease focus: SLC13A5 epilepsy is a citrate transporter disorder. Babies with SLC13A5 epilepsy begin having seizures shortly after birth. The seizures are often very difficult to control with currently available seizure medications. The children develop a significant movement disorder. They are trapped in bodies that do not do what they want. Walking is achieved very late, if ever. The children understand language but cannot speak more than a few words.

Headquarters: Redwood City, California

How did you become involved in rare disease: I have two children with the disease. Our diagnostic odyssey lasted 10 years. My children were among the first in the world diagnosed with the condition.  

Previous career: I was a graduate student at Oxford University in England when I had my daughter. She was so sick as a newborn and toddler that I dropped out of graduate school and have spent my life taking care of her and her siblings, finding answers, and pushing for cures.

Education: A.B. in classics from Princeton University

The Organization
Organization’s mandate
: Improving the lives of those impacted by SLC13A5 epilepsy through research and community.

Organization’s strategy: We think about the end goal—treatments and cures for kids that are suffering right now—and we work backwards from there. There is extensive strategy and immense urgency to our research. Because SLC13A5 epilepsy is so newly discovered, nearly nothing was known about this disorder when we started our nonprofit five years ago. We got to work funding the creation of animal and cellular models of the disease—everything from zebrafish to organoids. We assembled a scientific advisory board of experts in key areas from genetics to neurology to bench research to industry. This board helps assess the gaps in research and reviews grant applications. We hope to de-risk certain projects until industry becomes interested in them. We also hope our funding serves as seed funding, so that researchers can get the initial data they need to apply for other funding sources like the NIH. We encourage collaborations and publications. We are getting our patient population ready for clinical trials with a natural history study, biomarker discovery study, and patient registry. I hope we are empowering our affected families because they are the experts. We started hosting research roundtables to bring together key stakeholders. We are creating a network and building a community. 

Funding strategy: We are a grassroots organization, but we are always trying to add to our streams of funding. We started out as an organization almost entirely funded by individual contributions, mostly from my family and friends. Today, our group of donors has grown significantly as other diagnosed families fundraise in their communities. It continues to be a humbling experience to have friends, family and our community believe in our mission and donate at whatever level they can. This year is wonky because of COVID, but our median donation is historically around $100. We also apply to companies for small grants ($1,000 to $5,000) for conference support. We also continue to apply for grants whenever they pop up. I write letters of support for researchers applying for grants. We are hungry for funds, and despite our lean crew, we hustle. Until recently, we were an all-volunteer organization. We keep our internal costs extremely low and our board of directors covers these costs so that every dollar donated goes directly toward finding a cure. However, we are currently a Chan Zuckerberg Initiative Rare As One Project grantee organization. This is a capacity building grant that allows us to hire employees and invest in our infrastructure.

What’s changing at your organization in the next year: Our Chan Zuckerberg Initiative grant has added extra momentum and extra strategy to our research. We are completing a new strategic and operational plan and we are getting ready to expand our team.  

Management Style
Management philosophy
: I don’t enjoy managing people. As a result, my management goal is to create a collaborative process where we are peers each contributing our skill set. I do hope to lead by example in terms of focus, drive, and productivity.

Guiding principles for running an effective organization: I always aim to be the dumbest person in the room. We aim high and try to work with the most talented people in the fields of epilepsy, genetics, metabolism, gene therapy, and rare disease. Rejection does not scare me; failing our SLC13A5 families scares me.

Best way to keep your organization relevant: The urgency of our mission helps keep us relevant. Science has made so much progress in terms of CRISPR and gene therapy. We stay relevant by constantly trying to catch our disease up to the science.

Why people like working with you: My goal is to serve others. I never pretend that I’m someone I’m not. I am not a doctor. I am not a scientist. But I sure as hell am going to make sure that the patient is at the center of everything we do. I want to flatten speed bumps on our roadmap to a cure and help build networks of families, doctors, researchers, and companies.  I have learned so much from other nonprofit leaders, and I am so grateful for the hard work of other rare disease organizations. This may all sound clichéd, but in rare disease, I truly believe that a win for any of us is a win for all of us. Plus, I work for free.

Mentor: Brenda Porter, my children’s neurologist and the head of our scientific advisory board. She not only offered me a seat at the table; she helped me build the table.

On the Job
What inspires you
: My family inspires me. SLC13A5 epilepsy does not just affect my two children who have this disease. It affects our whole family. I want all four of my children to know that in this family when there is a problem, we roll up our sleeves, get to work, and help fix the problem.

What makes you hopeful: My daughter Tessa makes me hopeful. She is now 16 years old. For 15 years, she had hundreds of seizures a day. But thanks to an accurate genetic diagnosis and data from other families battling this disease, we have managed to find a cocktail of medications that has controlled her seizures for the past year. It gives me hope that we are on the right track.

Best organization decision: People are what make or break a rare disease organization. The best decision we have made is finding the right people at the right stages in our journey. Our journey started out as a diagnostic odyssey. This odyssey turned into a concrete diagnosis and a roadmap to a cure, thanks to Matthew Bainbridge and Brenda Porter. Keeping them on board as scientific advisors and then adding in key stakeholders with expertise in key areas has been our best decision.

Hardest lesson learned: Research is slow. Research silos are a real issue.

Toughest organization decision: My tendency is to want to give every penny to researchers but investing in our internal team is important too. Hiring project-specific consultants and an employee was a tough decision but what we needed at this stage in our organization.

Biggest missed opportunity: We are always limited by our funding. We could answer more research questions more quickly if we had more money. Speed matters for our families and their children’s health and wellbeing.

Like best about the job: The best thing about rare disease is the people. The rare epilepsy community is especially collaborative and inspiring.

Like least about the job: Asking friends and family for donations.

Pet peeve: The fact that many people don’t consider running a nonprofit to be a real job.

First choice for a new career: The dream is to cure SLC13A5 epilepsy and then retire. 

Personal Taste
Most influential book: I was a weird, nerdy kid, so probably Homer’s Odyssey or bawdy poems by Catullus in the original Latin. Those were eye-opening at a young age.

Favorite movie: I’m a sucker for an underdog, so Rudy, Rocky, and The Karate Kid are among my favorite movies.

Favorite music: My husband and kids are talented musicians. Any song the Nye Family Band is playing is my favorite song.

Favorite food: Cheese and crackers.

Guilty pleasure: People magazine and Cherry Garcia ice cream.

Favorite way to spend free time: One-on-one adventures with my kids. Also, I find cleaning our chicken coop to be surprisingly therapeutic.


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