We recently sat down with Greg Klimovitz, our new executive director as of October 2025, to learn what drew him to the Foundation, his vision, and how he hopes to build on the NFED’s success. In this Q&A, Greg talks honestly about why community is at the heart of everything we do.
What are you most excited about as you step into the executive director role?
I’m most excited about getting to know the people. What I never tire of is hopping on the train or on a flight when I know that when I get to my destination I’m going to be spending time and getting the opportunity to connect with people.
This summer at the Family Conference, people were arriving. The elevator opens, and out pops four-year-old Hank. I had only met him one time about nine months before that on a video call with his parents. He just comes barreling out of the elevator and steamrolls me with a huge hug. He almost knocked me over.
I looked at his mom, I was like, “Whoa! So he’s a hugger?” And she goes, ‘No, he’s not. He just knows you are family.’”
I’ll never forget it – just that sense of embrace embodies what the NFED is all about. That’s what I’m excited to not only be a part of but to continue to extend to other people.
I look forward to talking to families who are newly diagnosed, to those who have been around for a long time, and to the young adults who are asking new kinds of questions. I look forward to meeting with stakeholders and researchers in their spaces, to learn about the journey of ectodermal dysplasias or what’s on the front lines of research, and to do this in a very human way. That’s my favorite thing. Our first value at the NFED is people first. We live that out quite well.
How does the NFED mission resonate with you personally?
One of the things I was hoping for in this next season in my career was to work with an organization to expand how we understand what it means to be good neighbors and to be in proximity with people who are at so many different intersections of identity, experience, and location. The NFED does this exceptionally well!
The mission of the NFED really connected with what I’ve been doing for the last 20 years. I’ve been walking alongside people and communities who are often overlooked or misrepresented as they seek the sort of advocacy, awareness, and equity that they deserve, so that they can be valued as the beautiful and beloved people that they really are.
You’ve been on the NFED staff now for about 16 months. What do you think you’ve learned so far from families affected by ectodermal dysplasias?
The thing that I’ve learned the most about our families is how resilient and driven they are. The people I’ve talked to not only have questions, curiosities, concerns, struggles, and pain points, but I’ve learned that they’re driven to solutions. They really leverage their experience for the sake of getting the care and support they need. I’ve learned quickly how much the ectodermal dysplasias community is a family. They’re not just advocating for their own kid, but they’re advocating for all children with ectodermal dysplasia to be treated in the same way as their own.
What do you see as the NFED’s greatest strength?
The greatest strength of the NFED is the connection and the community that exists. Even if we could find ways to fund all treatments or to get everyone access to the care that they need, the number one thing that we offer is connection and community.
One of the things that I’ve learned about the NFED is that when folks come to our events and gatherings, they find people who feel like they’re more family than their own biological family. Maybe this is because they’re actually connected by genetics! They sometimes even look more like the people at the conference than their own biological family.
When we go to a Family Conference, and we see people embracing one another from all over the country, and even all over the world, and they only see each other maybe once a year, or they skip a few years, and they come back, and they reconnect again, that’s just something that you can’t measure. But, that’s what we do best.
You are now the fourth executive director for the foundation in 44 years. How do you hope to build on the legacy and leadership of Founder Mary K. Richter and Retired Executive Director Mary Fete?
As I build on the legacy of Mary Kaye Richter and Mary Fete, one of the things that I’ve most valued about what I’ve learned about them is that they’re beloved because they cared more about people than an organizational entity.
They were tireless, fierce, yet focused, friendly leaders and advocates. Both of them reflected strategy and empathy. They were driven, very accessible, and connectors. And that’s something that I hope to model as well. I want folks to see that I’m coming alongside them.
This is still a grassroots organization even though we’re bigger now. That’s something I don’t want to lose. We should always have a sense of belonging and connection where people don’t feel like they’re lost in the organization.
What are your top priorities for the first 90 days as Executive Director?
The number one priority I have is to spend time listening to individuals, families, staff, our partners, and medical care providers. I need to lean into what is really going on in people’s lives and professions and the ways that they can contribute to this organization or the ways that they can benefit from it.
I’m hitting the road. I’m visiting folks in person. I’m attending conferences to represent families’ voices in those spaces. By listening, I’m hoping to earn the trust of our community. I know that trust is something that’s earned, it’s not something that’s hired.
My entire career has been about community organization and development. You don’t build communities off of assumptions. You build communities from empathy.
While we know so much about the ectodermal dysplasias, there’s still so much to learn. How do you see the NFED continuing to publish new information and be a leader in the world of ectodermal dysplasias education?
For the NFED to stay at the forefront of being a global leader in ectodermal dysplasias, we need to continually stay connected to that global network of researchers and medical and dental care providers. We need a seat at the table so we can talk with them and explore how the conditions that our individuals and families face can best be advocated for in spaces that can lead to new discoveries and brighter futures. This is how we continue to serve as a catalyst to connect to those places that have the right solutions for different treatments.
Collaboration has always been the name of the game for the NFED. As the executive director, your role at the table is to represent the patient voice. How do you plan to listen to families so that you can be informed of what their needs are?
I’ve learned from Mary Fete, and what I’ve heard about Mary K. Richter as well, is the importance of being accessible as an executive director. That’s the number one thing that I want to continue to build on in my role, being someone whom families know that they can talk to and share their story with confidence and trust.
All change, all empowerment begins with story. Being willing to share your story, to feel as though your story is going to be heard, is going to be valued, and then that story can be leveraged possibly to mobilize change, that is my primary focus.
What is the biggest challenge our ectodermal dysplasias community faces right now?
The biggest challenge that a lot of our families are facing right now is uncertainty. There’s just so much unknown that our families face. But what is known is they’re not doing it alone. Families have a community of people in the NFED who will walk alongside them to help them on their journeys, to advocate on their behalf, and to help them find the solutions they need so they can thrive.
The other day, I was talking to one of our members. He’s now 60. And, he said to me, “I’ve gone to all of these conferences. I was at one of the earliest conferences in the 1980s when it was back in the small Holiday Inn. I’ve learned pretty much all I need to know about ectodermal dysplasias. But, I go to the conference so that when the young mom and dad show up in the room, they see me with my daughter and they know that it’s going to be okay.” That’s the very embodiment of what the NFED does in the midst of uncertainty.
What’s your vision for how NFED programs could evolve or be enhanced?
I want to explore what a community looks like moving forward in an increasingly digital age, when we’re more connected as a people than ever before.
We have more resources and platforms at our disposal to connect with people and feel a sense of belonging. I could envision conversations about what it looks like to have a different type of digital community. What does it look like to move away from social media platforms and instead, facilitate our own branded version of community in our own trusted and secured environment?
I could also see how we do Family Conference evolving. Family Conference is the premier event that we do as an organization. But, how do we make it more accessible to more folks? What type of content do we provide at this gathering that continues to have an ongoing relevance to new families and to folks who have been coming for 15 years? How do we shape it in a way that what they’re getting at those conferences is fresh every year?
I could also see us enhancing how we do advocacy at the NFED. I would love to see us expand our youth advocacy program in a way that allows folks to advocate in a variety of spaces. I also want to listen and learn from our youth and young adults who are leading us in this new chapter at the NFED.
Trying to help more people in more places, in bigger ways or different ways, all of it takes money. What does the development plan look like for the NFED and how are you going to achieve those things?
It’s all about story. When stories are told in a compelling way, it invites people in. I want to continually shape and share the stories of our community in a way that invites people to contribute and to use their resources, privileges, and connections to sustain our work. We can’t do this alone.
How can we work together to find out who has the resources and get our stories out in front of them? It means a lot of boots on the ground. It means making the phone calls, traveling around the country, talking with different folks, and really inviting folks within the community to share with us who they know that we should talk to about the mission of the NFED. That’s where I come in. I get to go to those spaces and talk to those folks, about the various stories and the issues at hand, so that folks know how they can contribute.
How can people contribute and volunteer?
If people want to contribute as a volunteer, we provide a robust support system for individuals who want to run their own family fundraiser. We absolutely love it when folks want to raise awareness and funds. Some folks have hosted huge galas and other events in their communities, and some people have just simply done an online ask on social media or through emails. You can help the NFED by running your own fundraiser in your own way, to leverage your interests, passions, and connections to help support the NFED work you value.
People often get stuck because they think a successful fundraiser is if they raise $20,000, $25,000. But there’s also fundraisers that raise $500, $1,000, and they’re successful in their own way, too. The reality is, as much as the fundraisers are about the funds, they’re also about raising awareness, getting our story in front of folks, and creating a new sense of understanding about what ectodermal dysplasias are and how our communities and neighbors can come together to create brighter futures for all who are affected.
People can also serve as family liaisons, advocates or volunteers at the Family Conference.
What else do you want to share?
I was talking to a member of our Patient Care Council who is a prosthodontist. He walked me through the entire dental journey as if I knew nothing. And, let’s be honest, I have a lot to learn as someone who is neither an affected individual or family. But you don’t have to have ectodermal dysplasia to care about the cause, to learn about it and then begin to advocate for the people our mission serves. That’s what I’m really excited about.
People may be thinking, “Who is Greg Klimovitz? What’s his resume that allows him to lead the NFED? He doesn’t have a medical background, so how will he lead us forward as an organization?”
I am reminded that this organization was not founded by a medical professional. This organization was founded by someone who cared about people and wanted to find solutions for the people whom she cared deeply about. And that’s who I am, too. That’s why I’m committed to supporting this organization so that we can continue to create a brighter future for all who are affected by ectodermal dysplasias.
And once I get your stories about ectodermal dysplasia out in front, I’m confident we’re going to continue to grow who we are and our impact.
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