Rare Leader: Nicole Johnson, Co-Founder and Executive Director, FOXG1 Research Foundation

The Basics
Name: Nicole Johnson

Title: Co-founder and executive director

Organization: FOXG1 Research Foundation

Social Media Links:

Disease focus: FOXG1 syndrome is a rare, pediatric, neurological disorder that greatly impacts brain development and causes severe physical and cognitive disabilities. FOXG1 syndrome is caused by a mutation to the FOXG1 gene, which is one of the first and most critical genes in brain development. There are currently about 900 known individuals with FOXG1 syndrome worldwide, with the diagnosis rate climbing steadily year-over-year. FOXG1 syndrome is typically a de novo (spontaneous, non-inherited) mutation, with multiple variants that affect individuals differently along the spectrum of severity. Most children born with FOXG1 syndrome are nonverbal, have severe cognitive and physical disabilities, experience intractable seizures, respiratory distress, cortical vision impairment, feeding difficulties, reflux, movement disorders, and more. Less-severely-affected FOXG1 patients present with autism spectrum disorder.

Headquarters: Sands Point, New York

How did you become involved in rare disease: Becoming involved in rare disease, science, and even medicine is the last thing in the world I would ever have expected or chosen as a career path. But, when my daughter Josie was diagnosed in 2014 at 2 years old with FOXG1 syndrome, it became the only area I was interested in dedicating my time to. There was just very little known about FOXG1 syndrome. At the time, there was not a concerted research effort underway for FOXG1 syndrome. It was lumped under Rett syndrome. On her genetics report it said congenital variant of Rett syndrome, but it’s not Rett syndrome. It’s a completely different gene with a variety of variants that all present somewhat differently. At that time, I knew that a real effort centered on FOXG1 syndrome had to begin and that I was at ground zero for what would grow into a much larger organization.

Previous career: Television producer for CNN, NBC, and worked in corporate communications. Founding partner for Qello Concerts streaming service, now called Qello Stingray.

Education: B.S. from Towson University in Maryland

The Organization
Organization’s mission: We are the parent-led, global, rare disease patient organization driving the research to find successful, precise therapeutics and ultimately a cure for every individual in the world with FOXG1 syndrome while deeply focusing on patient advocacy and support. It’s our mission to accelerate research to find successful therapeutics for FOXG1 syndrome and related neurological disorders.

Organization’s strategy: We’re centered in three main areas that are integral to driving drug development. We have a three-pronged approach. One is research. The second is data. Third is the patient community. We’re building a consortium of brilliant scientists to work together to deeply characterize the disease, answer the critical scientific unknowns, and test potential treatments ranging from cutting-edge gene therapy to nascent technologies. We have a ‘leave-no-stone unturned’ mentality. At the same time, our strategy is centered on covering all variants of the disease with a suite of assets that represent all the mutation categories, and then matching them to the coordinating patient data. That’s particular to how we go about things. Having mouse models, cell models for the missense mutation, the nonsense mutation, the deletion, and to be able to layer that over the data from the patients of those exact mutation types, is helping us to provide rich data on our patients and the disease.

Funding strategy: Since we launched in 2017, it’s been a grassroot roots effort with family and friends pulling everyone together. We do as much fundraising as we can, applying for grants, putting together our grants team, building strong teams within our organization. We have a fundraising committee now and we’re looking at all the different opportunities. Fundraising is one of the hardest things about this. We need millions of dollars, and we need people to care about a rare disease. Our fundraising strategy is to do everything we possibly can to raise money and we’re always trying to think outside the box for different ways to do it.

What’s changing at your organization in the next year: We’re just growing so fast. We’re building our team to meet our needs. I’m basically working 60 hours a week right now with a to-do list that would double those hours. We’re hosting the first-ever FOXG1 parents conference in November. We’ve had two science symposiums in the past, but this is the first time that we’re bringing FOXG1 parents from all over the world together. We’re hosting it on the beach in Florida so that we can provide parents and caregivers with a retreat-like experience and an opportunity to relax while we all connect and learn. Our worldwide foundation chapters are growing. We have a FOXG1 Research Foundation in Australia. We have an affiliate association in Spain and in France, and we have more in the works. We’re also about to announce the very first clinical trial for FOXG1 syndrome. This is for an epilepsy medication that is showing very good results for other epilepsy rare diseases.

Management Style
Management philosophy: I’m a producer at heart, coming from CNN, I can see everything that has to come together and all the elements to make it a success. I have somewhat of a positive, perhaps even spiritual, management philosophy. We don’t get the minutes of our lives back. And for our children, we don’t have time to waste. No matter what we’re doing, no matter who we’re working with, it’s imperative that we work smart, efficiently, innovatively, and carefully. But, most importantly, you need to feel good while you’re doing it. At the end of the day, for me, the most important thing for everyone is that the work we do feels good. Our lives are very hard as FOXG1 parents. Growing a global organization from the ground up, building it like a startup, working with industry, academia, parents, and more, with the goal to cure a rare disease in our children’s lifetime, is a stressful role to take on. Protecting our good energy is so important and you must identify what is draining that good energy and know when to call it. You must remove what’s draining you. And once you do, you open the door for much more productive and uplifting things. My management philosophy is not to be too rigid and allow for free-flowing communication because that is where the best ideas come. Stay organized and constantly maintain all the verticals but be nimble to change where change is needed.

Guiding principles for running an effective organization: We’re guided by these shared principles: Never feel locked into one way of doing things. Never think you know it all. Always challenge yourself/us to do better.

Our guiding principles are these questions: How can we do this better? What can we learn to improve ourselves? How is our current process working? What are the gaps that are slowing us down? How can we identify and solve them? What do we need to? What do we need to perform better?

Back to my spiritual style, I personally ask, are we leading with gratitude? I come back to this question often in my life and it always delivers. Breathe through the stress and come back to gratitude, and then and only then can you focus. And never lead with ego. I think this is common in our space, in business, and in life. I’ve seen how it’s the most counterproductive aspect in business. The goal is always, what can we do to help FOXG1 children live the healthy and able lives they deserve.

That means working as a team and seeing the big, holistic picture. And one more is just to value everyone and don’t forget your purpose. Every person, every touchpoint of this organization, is integral to our success. If you’re putting in one hour a month, or 60 hours a week, your time is valuable and appreciated. I want everyone to know this. I want everyone to smile knowing we’re here to change the landscape and to improve human life. We have a tremendous purpose, and it should always feel good.

Best way to keep your organization relevant: Be innovative. Be creative. Always reach out to people. Always make that connection. Always think, what can I be doing to keep my organization relevant. But you must be present. You must be out there. You found me to write this article. You found us. When you’re thinking innovation and you’re connecting with the greater rare disease space, and you’re seeing 10 steps ahead to reach your goal, you will be relevant.

Why people like working with you: I’m a good listener. I have a good way of hearing what people want to do and then turning it into action. I’m compassionate and most of all, it’s clear that I’m passionate about what we’re doing.  

Mentor: Orrin Devinsky, NYU Epilepsy. Bruce Leuchter, CEO of Neurvati, Daniel Fisher CEO of Tevard and Dravet father, John Crowley was an original mentor when Josie was first diagnosed. My cofounder Nasha Fitter is also a mentor, the Angelman FAST Foundation, Terry Jo Bichell from CombinedBrain. Mike Graglia from Syngap Research Fund. Those are just some of my mentors in this space. I’ve had mentors throughout my career in different areas. Myron Kandel from CNN financial news will always hold a special place. There is a new Netflix documentary out now about my writing mentor and friend, Ben Fong Torres.

On the Job
What inspires you: What inspires me most on the job is the FOXG1 children and their parents. Every single one of us is living an extremely difficult life. Every single parent that I come across just has this incredible, unique ability to advocate for their children. It’s the most inspiring love and passion that I get to see every day. The parents inspire me so much, but our FOXG1 children inspire me so much because they’re just amazing. I always say for the things that our children cannot do because of their disabilities, they make up for in this incredible, pure love and joy that comes out in every photo I see. I just want to give them the abilities and the healthy life that they deserve.

What makes you hopeful: The SMA story makes me very hopeful—that there is a gene therapy story out there for a rare disease that is working. While there are few actual approved cures out there right now, I believe we’re living in a time of scientific breakthroughs and that there will be a tipping point when we go from just a few successful gene therapies and just a small number of therapeutics approved for rare diseases to many. I’m keeping this mentality to prepare our organization for that many, for this tipping point, for precision medicine to treat the many symptoms our children experience, as well as to ultimately fix the gene.

Best organization decision: Starting the organization. We got together a team and we never looked back. I will also say having a strategy from the start to focus on every mutation category was one of our strongest decisions early on.

Hardest lesson learned: I went into it thinking that everyone would be very cooperative and learned that people think differently. Not everyone will understand the value of working as a team to help all FOXG1 children. It was hard for me to accept that there were people who have more need for control and they operate from a different place, a place of pride, rather than doing what is productive, helpful, and holistic. I’ve learned to remove any disappointing or counterproductive emotions about this and just put my head down and work as hard and smart as possible to always focus on the goal. I’ll always do what I can to find a cure for every child and adult in the world with FOXG1 syndrome. I know that I’m here for children that I won’t even meet one day, for children who aren’t even born yet. Keeping that in focus removes any disappointments we’ve encountered along the way.

Toughest organization decision: Choosing the research projects to fund is not always an easy decision. We receive proposals from many brilliant scientists at leading academic centers. Oftentimes parents on our team bring forward a scientist whose research proposal is meaningful to them. They’ve been talking for a while. Proposals can seem very promising to us and we get excited about them. But we know we cannot make decisions based on our parent-driven emotions. This is why we have a multi-disciplinary Scientific Advisory Board. They spend time vetting and evaluating research proposals. They find the holes, they ask the tough questions, they give great feedback. We value every single dollar that is donated to help us drive this science. It is our duty to be shrewd with the science we fund.

Biggest missed opportunity: I like to believe that anything that felt like a missed opportunity was just a redirection in the right direction. We recently spent so many hours trying to hire a director of development. We’re ready to bring someone with years of experience to help our non-for-profit development holistically. We must have gone through 60 applications and got down to two candidates. We underestimated the current competitive job market, and both candidates took other positions. Again, is this just a redirection to the right person to help us grow? I’m going to say yes. So, we are continuing to search for a great director of development to join our team.      

Like best about the job: The purpose. I never felt what it meant to have such a purpose in life before. I certainly loved being in the music industry and I loved working in television, but knowing that the work I’m doing here is going to impact human life is unlike anything I’ve ever imagined.

Like least about the job: The purpose. The fact that I’m here because Josie has FOXG1 syndrome is my least favorite thing about the job. I would love nothing more than to have a typical life for her and for my family. I would love for her to be running off the school bus right now, telling me about her day, grabbing food out of the pantry, and running off to her dance class and all these simple things that everyone around me experiences. She had a big seizure yesterday. She’s tube fed. She can’t talk to me. We’re having discussions wondering if she’s having migraines from her new seizure medicine. It’s a heavy life and I’m just so sorry for her that she suffers. And yet, I could start singing “The wheels on the bus” and she’ll smile. She’s so sweet and precious. It’s so hard for her. I would give anything to not be talking to you right now because the term rare disease doesn’t impact me in my life. That’s what I like least about my job.

Pet peeve: Hearing people chew. I was happy to hear this was a genetic condition called misophonia. That makes sense because my sister suffers from it much more than I do. Something happens to us when we hear people chewing. Chewing gum is the worst offender.

First choice for a new career: I’d be a singer in a band, I just have to learn how to sing first. I’d play the guitar too. It may or may not be true that my Josie’s name is inspired from Josie and the Pussycats from Archie comics.

Personal Taste
Most influential book: The Universe Has Your Back by Gabrielle Bernstein. I must have gifted this book to at least 20 people and also Deepak Chopra‘s Seven Spiritual Laws of Success is a guide for me.

Favorite movie: My son will tell you that every movie is my favorite movie. We just watched CODA, and that’s my favorite movie of the week. I have a 15-year-old son, Tanner, and we’re going through the list of all-time best movies, which is fun to do with your kid. Some of my favorites include Forrest Gump, Almost Famous, True Romance, and Dead Poets Society.

Favorite music: My favorite band of all time is Phish, but I love everything from Motown to the Beatles. Bill Withers is a favorite, jazz, Bowie, classic rock, reggae, indie music, old school rap, A Tribe Called Quest—there’s nothing I don’t love.

Favorite food: New York pizza

Guilty pleasure: New York pizza and DIY Instagram videos. When you watch someone just do things themselves, like home renovation, they’re mesmerizing to me.

Favorite way to spend free time: First is just being with my family. I didn’t mind being stuck at home for two years with my people. Second is seeing live music, especially with the friends I love. Third is walking in nature.