Rare Leader: Nasha Fitter, CEO, FOXG1 Research Foundation
January 7, 2021
Name: Nasha Fitter
Title: Co-founder, CEO, and head of research
Organization: FOXG1 Research Foundation
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Disease focus: FOXG1 syndrome is a rare neurological genetic disorder that impacts brain development and typically causes epilepsy, as well as a spectrum of severe to moderate physical and cognitive disabilities. Mutations to the FOXG1 gene are mostly (de novo) non-inherited. There are currently about 700 known people in the world diagnosed with FOXG1 syndrome.
Headquarters: Sands Point, New York
How did you become involved in rare disease: I became involved when my daughter began having seizures at seven months. She was diagnosed at nine months with FOXG1 syndrome and that’s when my life altered completely, and I became involved in rare disease.
Previous career: Currently director of rare and neurological diseases at Ciitizen
Education: B.S. in finance from the University of Southern California and an MBA from The Harvard Business School
Organization’s mandate: Our mandate is to find a cure for all FOXG1 around the world.
Organization’s strategy: We have a succinct strategy on our path to a cure. First, it involves building assets that we can use to understand our disease and to test therapies. These include animal models and stem cell models. Second, is organizing patients and gathering patient clinical data. And third, is doing various proof of concepts for therapeutics that we would take forward ourselves or be able to license to different biotech companies.
Funding strategy: Funding is an all-hands on deck approach. We all fundraise. All parents do a hundred million things. We send out letters. We tap our networks. We have a store on our website. We are on the Amazon affiliate program. We apply for grants. We were just awarded a half-a-million grant from Chan-Zuckerberg initiative. We try it all.
What’s changing at your organization in the next year: This next year (2021) is going to be our most exciting year to date. We have finally finished the creation of the majority of our assets. Now, we can start to test therapies. We will also get in-depth data from our Natural History Study. We finally have the momentum where we’re going to get results from all the hard work we’ve done, the foundation that we’ve built.
Management philosophy: This is not possible without passion and love. The days are very long. It’s very hard. There are lots of frustrations. My and my co-founder Nicole’s main philosophy is that the end goal of finding a cure is more important than any difficulties we face along the way. The second part is that we run like a business – like a small, flexible, entrepreneurial business. I think that’s why we’ve been able to accomplish as much as we have in such a short period of time. We are organized. We have a strategy we follow. People have tasks. I don’t micromanage anyone. Everyone is responsible for what they’re supposed to do. Then they run with it. I also try to allocate parents to do what they’re best at and that’s what they give back to our organization. We all just work together as a team and as a family.
Guiding principles for running an effective organization: Guiding principles are having vision, having the ability to create a strategy to be able to achieve your vision, and being able to execute that strategy. It is a page from a business school handbook, but when I look at the other organizations that are not really doing as well, they fail in one of these three areas.
Best way to keep your organization relevant: It’s just keeping fresh, keeping innovative. We try to be on the cutting edge of everything. We take this philosophy that we’re not just trying to cure disease, but we’re trying to change this convoluted industry. We were awarded the Chan-Zuckerberg grant because we have an entirely new way of doing a natural history study using machine learning and AI technology. We’re constantly trying to look at the way things are done and do them in more innovative ways and always think bigger. Just like a startup would. We’re constantly looking at what we need to achieve and saying, ‘How can we do this differently? Can we think outside the box? How can we change the industry while we do it?’
Why people like working with you: People like working with me because they know that I truly care, and that I’m doing this for the right reasons. I’m not just focused on my own daughter. I’m focused on the community at large. I have a passion for making change. I feel that this is my life’s mission. I have been blessed with many things that allow me to do this work. I also try to make things not about me, because it is not about me. Our work is possible because of the group of my fellow FOXG1 parents who have come together to find a cure. Also, we run the foundation like a startup and people like working for startups. They’re fun and exciting, you feel like you’re changing the world.
Mentor: Some of the people I admire most in the space are Monica Coenraads of the Rett Syndrome Research Trust. I admire her tenacity. Also, Paula Evans and Allyson Berent-Weisse of the Foundation for Angelman Therapeutics and their team. I tap them a lot for their advice. I admire those who have figured out how to use the system to make it work for their conditions, had to make difficult choices, and have been smart enough to engage biopharma or start their own biopharmaceutical companies, like Paula and Allyson have.
What inspires you: What inspires me the most on the job is the children. Every time on our Facebook group, when another parent is talking about how their child has been screaming for 72 hours, and no one can figure out why? When someone posts that their child has had a grand mal seizure and they’ve turned blue and they don’t know what to do. When we hear of another FOXG1 child that dies—these are the stories that make me feel like I am not working hard enough and that I’m not thinking innovatively enough, or not raising enough money quickly enough. This is what keeps me going and keeps us all going.
What makes you hopeful: What makes me hopeful is that science is changing at an exponential rate. If this was ten years ago, maybe I wouldn’t be as hopeful, but science is changing so quickly, and we are seeing other similar diseases in clinical trials and children are benefiting. To me, that is the greatest hope that if we just work hard and smart enough, we will be able to find something for our children.
Best organization decision: One of our best and hardest decisions was starting our own foundation. This is important because there was another FOXG1 foundation that I and a few other parents had initially joined. We then we made the hard decision to leave and start a new foundation. That was one of the most critical decisions we made because leadership and strategy are important. If we hadn’t done that, we would not be as far as we are today.
Hardest lesson learned: The hardest lesson and the most valuable lesson this journey has taught me is be patient and be optimistic. Don’t let anxiety or my ego take the best of me. As hard as it is, enjoy the process. That will help keep everyone positive, hard-working and focused. One hundred things will go wrong before something goes right. That’s what it takes to create real change in the world.
Toughest organization decision: The toughest decision was when we left the other foundation, after that, everything has not been that tough. Things worked out. It’s hard when we are constantly trying to decide between different scientists. It’s difficult since we’re not scientists ourselves. We don’t know how the game is played. There are things that we’ve done that we would do differently, but nothing seems as difficult as that early decision to start our own foundation and do this work.
Biggest missed opportunity: I wish someone had told me that the first thing I should do is create a biobank and start collecting patients’ samples and create IPSC lines because it takes years to do that. I only figured that out a year into this. We wasted so much time. Today we could potentially already have had a therapy if we had started that on day one.
Like best about the job: That it is 100 percent purposeful, and it is pure in its purpose because it’s for my own child and other children who are suffering. I don’t think I’ve ever had a purpose that has been this pure. It’s hard to explain. There’s no wavering in my passion for this cause.
Like least about the job: How hard it is. If we think about what falls on a parent’s shoulders, it’s staggering. First, you’re taking care of your special needs child. Most of us have other children as well. Then, we’re trying to find cures for diseases that nobody else has figured out a cure for. We have to understand our disease better than our neurologists and doctors, but then we also have to change the way therapeutics are found for these diseases. For a layman parent like myself, with a business background, to be able to dive deep into molecular biology and understand the science, and at the same time, try to negotiate contracts, build a registry, engage with parents, connect to biopharma, figure out how to raise $5 million, etc., etc., It’s just a lot. If I just think about it, and I’m speaking for all rare leaders, the amount that is placed on our shoulders is overwhelming. That’s the hardest part of the job—the overwhelming amount of things that you are not good at that you have to become excellent at.
Pet peeve: Humming. Can’t take it when anyone around me hums.
First choice for a new career: I’d do something fun, like running a boutique hotel in Bali with my family and we all just live there and eat amazing food. That’s my fantasy.
Most influential book: The Courage of Strangers: Coming of Age with the Human Rights Movement by Jeri Laber
Favorite movie: Sound of Music
Favorite music: International music
Favorite food: Lamb biryani, Parsi style
Guilty pleasure: I love TV, especially historical period pieces. I love Poirot.
Favorite way to spend free time: All my hobbies are lazy hobbies. I love to eat. I love to cook. I love watching films and watching TV. I love reading. It calms me down to read. If I’m very stressed, I’ll play Tetris on my phone.
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