RARE Daily

Rare Leader: Geoff Rhyne, Co-Founder and CEO, IDefine

September 16, 2021

The Basics
Name: Geoff Rhyne

Title: Co-founder and CEO

Organization: IDefine

Social Media Links:

Disease focus
: Kleefstra Syndrome (KS) was first named in 2010 for the Dutch researcher who identified the underlying gene that causes the syndrome. Kleefstra syndrome presents an array of neurodevelopmental and systemic challenges. Global delays, intellectual disabilities, ADHD, anxiety, self-injurious behaviors, and seizures often occur. Health challenges such as congenital heart defects, structural kidney abnormalities, and recurrent infections may also occur.

Headquarters: Atlanta

How did you become involved in rare disease: It’s all about my daughter. On February 26th, 2019, we received her diagnosis for Kleefstra syndrome. She was 15 months old at the time. My wife was running point on early intervention and, at the time of diagnosis, already had her in all the therapies. As a result of my wife being a special education teacher who actually teaches three- to five-year-olds, she was well-equipped to manage those first 15 months. In parallel, she was pressing for genetic testing due to the global developmental delays we were observing. My mindset is not to worry about things until they become tangible, but once they become tangible, if there’s a problem, I want to solve the problem. Receiving the diagnosis began the odyssey to figure out how we could contribute to helping in this particular syndrome, as well as the more global rare disease space.

Previous career: Former chef and owner of food condiment company, Red Clay

Education: Studied hospitality at the University of Tampa, then transferred to College of Charleston, then went to culinary school, but left culinary school without graduating.

The Organization

Organization’s mission: Our mission is to discover a life-changing treatment or cure for Kleefstra syndrome. We’re intent on accelerating research and developing coordinated care. There is no guideline of care right now. It’s something we’re actually working on. We are also focused on building the community—not just the KS community, but how can we bring in some other conditions to what we’re doing. It doesn’t need to be so siloed there.

Organization’s strategy: Overall, it’s just to be relentlessly collaborative. That’s one of our core values. We use the phrase “it takes a village” as our effort is a community wide one. That said, it’s going to take much more than just our Kleefstra village. It’s important that we reach out to other folks, discuss lessons learned, opportunities, network to understand who to talk to and who not to talk to. As a new organization, we want to try and make sure we don’t repeat the mistakes of those that have traveled the path already. Hopefully, as we’re doing this, we’re documenting our own journey so we could develop a playbook for others to follow. To launch, we have approached our effort with an entrepreneurial, bootstrapping mindset. The rarity is some of these other organizations that have this huge capital injection, and while that’s amazing, most organizations are in a similar position as us from a resource perspective. What are the organizations that are in a similar position to all the other ones that are making breakthroughs and how did they do it? There needs to be a playbook, and hopefully we can fold people into our learnings to become part of our success.

Funding strategy: Right now, our funding is just coming from the patient community. It’s on the backs of the people who are already burdened with this particular condition. You have to start there in a very grassroots effort, and then we’re heavily involved in looking at different grant opportunities, finding out what partnerships make sense, what organizations play in this field that we could tell our story to. We feel like we have a compelling story, and our aims are to give back in a rising tide lifts all boats scenario. Hopefully, as we gain a little bit of awareness about what we’re doing, we can start leveraging more corporate social responsibility opportunities and find some larger partnerships to help propel this forward. Ultimately, we are targeting partnering with someone in biotech where we could co-invest and create a flywheel effect for the successes that we’re sure to realize.

What’s changing at your organization in the next year: September 17 is KS Awareness Day. We launched IDefine last year on that date. We’re at the stage right now where we’re migrating from startup to execution phase. We wanted to gain as much knowledge as possible through all of our conversations out of the gate, but now that landscape is shifting to us being targeted towards important research objectives and investments. That’s a primary aim. As we do that, we’re trying to meet the ever-evolving needs of the families and then expanding our global network. We are intent on scaling to be an international organization, and to a degree we already are, but there’s still massive gaps in the community. For instance, we just learned about 10 Chinese patients through some literature that was published on the Kleefstra syndrome meta feed, but we didn’t know any of those patients before. As we look to grow our population and serve everybody with equitable, inclusive opportunities, where are the gaps? India, China, South America? Basically, it’s Western Europe and North America that have access to what services are available. As we look five years down the path, which may become two years with the way everything is being accelerated, how are we going to meet the needs of those people?

Management Style
Management philosophy: I am all about teamwork, transparency, and accessibility. Teamwork first. This isn’t going to happen with just me by any means. My acumen alone isn’t going to get us very far in the scientific field. We have two incredible parents who are leading our SAB. I will be the guy that’s relentless in reaching out to people. I often use the analogy of our team being a football team where I am one of the lineman up front clearing a path for the skilled positions to come through and get us further downfield. It really is an incredible team effort. Being as transparent and accessible to the community about initiatives and research projects are equally important. Having been a part of many of these meetings where the discussion has become quite technical, I think I can deliver what’s going on scientifically in a digestible and approachable manner. Ultimately, the patient community wants to be aware of the efforts taking place, but it often needs to be translated or distilled down for our whole community, including me, to grasp. Finally, if someone reaches out, being accessible for families in need is critical. The burden of care can be incredibly isolating at times, and we need to always be looking out for one another.

Guiding principles for running an effective organization: Being aware and observing everything that’s happening around you while also being an active listener. This isn’t about me. This isn’t about my daughter. It’s about listening to the community. It’s about listening to what our partners need. Good relationships are rooted in active listening. If we’re going to develop a clinical care guideline, what do they need? If we’re going to develop a research strategy, what does that partner need? There are all these partnerships and, as with any relationship, you have to be an active listener to be able to contribute. It can’t just be about what you’re trying to inject. Also, being aware, aware of your surroundings. I talk with my five- and seven-year-old boys about being aware of your surroundings. Watching and seeing where successes are being realized, seeing where people are making missteps. There’s a balance to be found between sitting back and observing before you jump right in and the urgency we must act with.

Best way to keep your organization relevant: It follows up on the previous question—being present with everything that’s happening around you. It takes a lot of time. It takes a lot of digging, but being present, while also being forward-thinking. What’s coming down the pipe? We can’t always be reactive to things, and in fact, we need to be proactive. What is the next wave of research technologies? What’s the next wave in best practices of managing a natural history study? We can’t always look to the past for the way things have been done because of the way that everything’s accelerating. There’s going to be a new way tomorrow and the next day. We need to be thinking ahead of that to try to hedge our bets in order to be relevant.

Why people like working with you: I hear from a lot of folks that I encounter that it’s my energy and authenticity. I don’t sugarcoat things. I am transparent and I’m an eternal optimist. I referenced myself as a sled dog. Put the reins on me, I’ll pull us as far as I can possibly pull us. Hopefully folks will come in on the sides and flank me, and we could really drive this thing forward.

Mentor: What I view as a mentor is someone that you sit down with and spend a lot of time with and develop a cadence with to help guide you. I don’t know that I actually have that. The season of life that we’re in is tough to find a mentor like that. But I do think that the rare disease space is full of people who are willing to give their time and advice. There’s a laundry list of people there. Cam McCloud and Preston Campbell from the Cystic Fibrosis Foundation have been amazing. Ever since I started on this journey, Cam will reach out to me once every couple of months, to check in. She’s been the chairman of the board since 1989 of the CF Foundation. What an incredible resource. And then all the powerhouse players that you see in the rare disease space—Mike Graglia, Nasha Fitter, Nathan Peck, Amber Freed, Sanath Kamar Rumesh, Megan O’Boyle—the list goes on. I’ve reached out to a lot of people and every single one of them has taken my call and offered me great pieces of wisdom and advice. I’ve been able to utilize that to push our effort forward. Now we’re starting to get folks who reach out to us asking us how we did this, that, and the other thing. It’s our obligation to pay it forward. You create this kind of hub of energy where we’re all pushing forward. We’re all vying for the same thing, which can be a challenge because it’s a very limited pool of resources, while also empowering because collectively our voice becomes stronger.

On the Job
What inspires you: I feel I’m incredibly fortunate to have this purpose in life. Every single day I wake up with an intense sense of purpose to others—I come from hospitality, so I’ve always had this servitude towards others mentality. In my role now, I have this opportunity to impact people’s lives dramatically and positively—It’s unbelievable. It’s obviously way bigger than me. It’s bigger than my daughter. I’m able to talk to people from all over the world and talk about how we could potentially make this legacy where we provide an impact to humanity. We have an opportunity to change the world, and that is inspiring. Talk about a motivator. That’s everything.

What makes you hopeful: Seeing the successes that we’re seeing in the space right now. It’s been a long journey for a lot of folks. I’m still kind of bright eyed and bushy tailed being only a couple of years in, but there’s so much happening in the space. I believe that there is a trickle-down effect for all of us where this rising tide lifts all boats. As you talk to the folks who can really make significant inroads, scientifically there’s so much happening. When I see our community growing and building, when I am able to answer the call for someone that has just been diagnosed, knowing that they didn’t have to walk this journey in solitude, that is incredibly empowering. It confirms that we’re doing the right thing and we’re on the right path.

Best organization decision: The best decision was how we approached our launch. We didn’t blindly rush in. We were methodical about it. We saw the rare disease space and talked with others. You hear a lot about what’s already being done. We wanted to make sure we weren’t duplicating efforts or that we weren’t contributing to fragmentation. Reaching out to as many other people within the KS space to gauge where the gaps were and to just answer the question of whether we were needed. Once we figured out that we were needed, we were not competing or at conflict with someone else who’s trying to do something similar. Doing so allowed us to have a smooth launch. We’ve been able to carry that momentum forward.

Hardest lesson learned: We’re still a little bit too young to really have any massive mistakes, but I guess the biggest thing is that not everyone feels as motivated or energized as you do. The participation rates within the community aren’t as high as I thought they would be. Perhaps that’s my own naivete, expecting that 100 percent of people would be on board. That’s not the case. As I reflected on that, it’s that not everybody is in the same stage of life that we are. There are families out there that have been fighting this fight for 10 to 15 years and the space 10 to 15 years ago wasn’t near what it is today. I keep saying the time is now, and I believe it to be true. For those that are in a different season, I hope to be able to carry them with us as we realize the successes.

Toughest organization decision: Frankly, we’re in the midst of that right now. There are several incredibly exciting opportunities to pursue, and we don’t have the funding to do them all. It’s a difficult position to be in because I see the value in each one of these and we don’t want to have paralysis of decision-making. We need to act. We need to move forward. But it’s a decision that weighs on me heavily about what is the best, what is the largest ROI? We’re coming to grips with it over the next couple of weeks.

Biggest missed opportunity: Perhaps it just hasn’t presented itself as a missed opportunity yet because there are so many relationships that are in their infancy. We’re a young organization. By virtue of that, our relationships with others are also rather young and all signs are encouraging. There are several different options that organizations could go with as far as who they partner with for natural history studies or for data collection for potential research. We haven’t had the experience enough to actually be able to look at this in hindsight and say, “Wow, that was a missed opportunity. God-willing we don’t. Like to my aforementioned answer, we’re at that stage right now where we’re going to be making some pretty critical decisions. I guess the biggest regret would be if we did let an opportunity slip through our fingers because we failed to act. It is a time in our organization’s existence for us to act now. There’s all these opportunities and we need to move forward on as many as possible. Because 12 months from now, if we look back and find those who have taken similar opportunities and seeing their successes, if we’re not on the same level with them, that would be incredibly disappointing.

Like best about the job: The purpose is to help others, to give a voice to those that don’t have a voice, to give an opportunity for those who didn’t always have opportunities. That’s an incredible blessing for me.

Like least about the job: Probably the same thing because it’s constant. I go to bed every night, seeing my daughter, and giving her a kiss. I wake up every single morning giving her a kiss. It never leaves me. This purpose, this mission, this challenge—it never leaves me. I feel like we have an opportunity right now that feels like it’s beyond my fingertips, which is frustrating because I know how many people it can help. I know in my heart of hearts that this is going to be something that will impact our entire community and other communities because we believe organizationally that our lessons learned will help impact so many others because Kleefstra is such a dynamic fundamental gene. With my daughter, the effort is constantly front and center motivating me to push harder.

Pet peeve: Negativity is my pet peeve. There was a laundromat in Charleston that rotated quotes on a sign frequently. There was a quote that read “A negative mind will never yield a positive result.” There’s always a solution. If we’re not attacking the problem, if we come to a roadblock, we need to have creativity. We don’t need negativity. We need to have creative solution-minded people in the room where we can discuss the problem. We hit this particular challenge. Let’s go over it. Let’s go under it. Let’s go around it. We’ve got to be resourceful and figure something out. You can’t just resign yourself to the fact that you lost the challenge. There’s a way to continuously move forward.

Selfishness is my other pet peeve. This life isn’t about what you acquire. It’s about what you do for others. That’s the most fulfilling thing. So, negativity and selfishness are definitely two massive pet peeves.

First choice for a new career: Over the past year I have been saying that I never would have imagined myself being in this position. I had dreams of playing baseball professionally. I had dreams of owning my own restaurant and running restaurants, and just cooking. And at the end of the day, there was a shift in priorities as my wife and I got married. Family became the front and center priority. Now, I view my work as an opportunity. I have been provided this opportunity because of my daughter, and so, I’m able to work on something to benefit my family every single day. That’s everything to me. Family is the most important thing in my life. It’s what I spend all my time on. At this point this is so fulfilling as a path. I don’t think I would want to do anything else.

Personal Taste
Most influential book: The 4-hour Work Week by Timothy Ferriss and The Art of Happiness by Dalai Lama

Favorite movie: Anything with Bill Murray

Favorite music
: I love bluesy soul.

Favorite food: That’s the challenge. After spending 20 years in the kitchen, I love food. I generally care about where food comes from—fresh seafood in particular, and I love blue crabs. I also love fresh vegetables from the garden.

Guilty pleasure: Eating whenever I get stressed.

Favorite way to spend free time: Outside of doing things with the family, I love just getting out, going to the beach, or anything like that outdoors. I relish my time in the gym in the morning. It helps me set the tone for the day and makes me mentally sharp. The best stress reliever is getting active—it promotes mental health stimulation and feeling good.


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