RARE Daily

Rare Leader: Fallon Schultz, President and Founder, International FPIES Association

June 17, 2021

The Basics
Name: Fallon Schultz

Title: President and founder

Organization: International FPIES Association

Social Media Links:

Disease focus: Food protein-induced enterocolitis syndrome (FPIES) is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g., rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life. Unlike most food allergies, the FPIES reactions are delayed and usually begin about two hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20 percent of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the emergency room for immediate treatment. About 75 percent will have acute episodes on diagnosis. The other 25 percent children will have more chronic symptoms, which resolve within one week after avoiding the food.

Headquarters: Point Pleasant Beach, New Jersey

How did you become involved in rare disease: My son was my first encounter with FPIES. In 2008, I gave birth to my son and right away something was just very wrong. He was a breastfed baby and was covered from head to toe with bleeding eczema. He would vomit every time he would eat. He would have bloody diapers. And that was my first very intimate acquaintance with rare disease. No one really knew anything about FPIES. It took two years for my son to get a diagnosis. Those two years were by far the worst experience of my life. I probably experienced every challenge possible that you can face with trying to navigate rare disease and have a child diagnosed to the point of even being accused of Munchhausen’s, taking him to different providers, fighting to get coverage from insurance to allow us to go to Children’s Hospital of Philadelphia. I was convinced he had a disorder that was actually a cousin to FPIES. At that time, there was nothing at all on the Internet about FPIES. At our initial visit, I brought an accordion folder of photos, videos, things that I had been documenting because I had been told so many times from other providers that I was an anxious new mom and that the blood would go away in his diapers. When we met my son’s gastroenterologist, he examined my son and left the room with the photos, videos and documentation I provided. I’ll never forget this moment in my life. When he returned, he came back into the room with other providers. He sat down, held my hand and said, “Mrs. Schultz, you’re not crazy. There’s something wrong and I’m going to help you.” That moment was the launch pad of what has now become the International FPIES Association.

Previous career: Professional ballerina, licensed clinical social worker, and rare disease specialist

Education: Bachelor of social work from Monmouth University, master’s in social work from Columbia University, licensed clinical social worker, and has a complementary and alternative medicine certificate

The Organization
Organization’s mandate: We are dedicated to improving the diagnosis, treatment, and quality of life for those with FPIES through advocacy, education, support, and research. I-FPIES strives to be the worldwide leader in FPIES awareness and the issues surrounding this condition. We seek to increase awareness by providing educational resources, support services, advocacy, and the development of groundbreaking research through our partnership with the medical community.

Organization’s strategy: We are far more grassroots than other organizations. We are most impactful in creating collaboration between the medical field and the patients and caregiver community. The way that we’ve been able to advance this disease so quickly is by creating that partnership. Early on, I recognizedhat there was a huge disconnect. There was no evidence-based medicine because there was no evidence that was put into the literature. We decided that this needed to take priority in order to advance the disorder. The first step was to establish an ICD-10 code. I partnered with our medical advisory board and together we wrote a petition to the CDC to grant us this identifier. When we were awarded this honor, the game had changed. We were real and our patients and families were no longer hidden in the shadows. I went to the CDC and worked with our medical advisory board and wrote the official ICD 10 code for FPIES. Next, we needed to create awareness on a national level. We lobbied Congress and were awarded a National FPIES Awareness Day. We were finally in a place to entice medical providers to accept FPIES. In 2010, there were only 11 publications on FPIES. Within three years, we grew an expansive repertoire of information until we had more than 100 articles published in medical journals. This was a prime example of our commitment to patients and our partnership with the medical community. From here, we were able to tackle our biggest feat— The International Consensus Guidelines for the Diagnosis and Management of FPIES—a 99-page document led by 40 international experts in the field, all of whom donated their time to advance the literature and move the needle forward. I worked with them to pull their data and then also bring those patients into those institutions, making the connection to the patients so the institutions can have a much wider perspective of the spectrum of FPIES because a lot of what the physicians knew of FPIES was very skewed because they had only seen a few patients. The strategy was to first bring the attention to the medical community and work with the medical community. Then, once we had convinced them and gotten them on board, it became much easier to create interventions and support for the patients and families. That led into the consensus guidelines. Forty of the best doctors all over the world to come together to write this document. They all did it pro bono and they donated their time. It was a three-year long project.

Funding strategy: Funding is a challenge for our organization. Because we do not have a pharmaceutical intervention, we can’t rely on pharmaceutical funding and unrestricted grants. Most of our grants come from elemental formula companies. There are only four elemental formulas on the market. At this time, the high cost to produce these specialized items leaves smaller budgets for grant funding. Much of our funding comes from grassroots fundraising—usually directly from patients and families. We have received some generous donations from families, all of which are collaboratively accounted for and purposefully utilized. We do host our own fundraisers as well. Recently, a private donor has bestowed an endowment to our organization. We are also very grateful that the National Institutes of Health has committed to set up an FPIES workshop to designate resources and funding to the condition.

What’s changing at your organization in the next year: I-FPIES was initially embryotic. Over the years we have grown, and we are currently in our toddler years. We are in an exciting time for our organization. COVID impacted us in terms of scaling back to make sure that we maintained our funds and secured them so that we would have longevity with the organization. This has posed some challenges. Our anticipated NIH workshop was postponed, but we are on track to reschedule and ensure this gathering of the minds is impactful and done well. The goal of this meeting is to utilize a multi-disciplinary team of leading experts, coupled with the NIH, to tackle a diagnostic, a biomarker, and a treatment that will eradicate this disease. We should see significant advancements, not just in the quality of life, but on some real interventions to be able to help these patients and families. Currently the only way to diagnose FPIES is trial and error. This is burdensome and traumatic to our patient population, and we are deeply committed to enhancing quality of life.

Management Style
Management philosophy: My management style is very much based on connection. Even when I’m working with the NIH, or I’m working with the CDC, I want to have an intimate understanding from all angles. I am an advocate for strategy and tend to favor conducting thorough needs assessments. With a background in research, I enjoy the investigative process of understanding the visible issues and its roots from both a quantitative and qualitative state. I like to take an aerial view, and even a storefront view of what’s happening to pair it together and ensure purposeful and impactful utilization of funding. It is imperative that any intervention or action plan yields an immediate outcome from it, a positive outcome. 

Guiding principles for running an effective organization: Integrity, integrity, integrity. Commitment to the patient is our guiding principle and not one we ever shy from. To be effective, partnerships are imperative. We pride ourselves on collaboration and purposeful planning.

Best way to keep your organization relevant: By being immersed in the patient community and understanding what patients’ needs are. When I’ve looked at other, larger-scale organizations, there are oftentimes a disconnect where the executive director maybe doesn’t have a touch point with patients. That is not the case here. My team and I are completely immersed in the patient community on a day-to-day basis. That keeps everything moving forward. The patient is in the front of our minds. It’s the thing that pushes all of our decisions and something we hold dearly as an organization.

Why people like working with you: I am very passionate. I am very energetic and excited about what I get to do at I-FPIES. Having the personal and professional experience of being a parent and an advocate is definitely something that pours from my soul and into my work. I would say I am relentless, which has been a quality that has built trust. If I say that I’m going to do something, I mean my word. If it means marching into the NIH, then I’m going to do it. If it means battling the medical community to understand the realities of this disorder, I will do it. There’s a trust factor and a faith in what we do at I-FPIES in knowing that if somebody says it can’t be done, we’re going to get it done.

Mentor: I have two. First and foremost, my son. He is the inspiration and the motivator to everything I am and everything I do. I look to him as the heartbeat of this organization as his struggles have paved the way for the one million patients living with FPIES today. His bravery is admirable, and I wish I could be half the person he is. He is amazing in every way. Also, I was raised by a man named Charles Simon. He’s the person in my life who taught me integrity, ethics, morals and values in a way that I can’t quantify or qualify unless I talked to you for days on end. He instilled in me this confidence not to be afraid, to be strong in my convictions, and to be fearless without apology. He is absolutely my life’s mentor and a person whom I would dedicate everything and anything to in my life because he made me the person that I am today.

On the Job
What inspires you: The light bulb moment that happens when somebody who’s been living with this and struggling, realizes that they can and will manage their life. I love the opportunity to be a sound boarding and support. Often times, I get frantic phone calls from patients and families in the wee hours of the night. They’re in the hospital, feeling unsupported and confused and are being denied their reality. They are absolutely exhausted and broken. I have the privilege of conversing with these families in these frightening moments and to have the chance to offer them support. Often times they are misinformed, being mismanaged and have little to no support. But when we have these conversations and we walk through these feelings, the experience of being validated becomes the treatment. To have a chance to hold someone’s hand and reassure them that they will get through this, to provide secrets and tips for management and survival, well, it is beautiful.  I am truly inspired to keep engaging in these moments, especially when I received a phone call a month later, or two months later, or three months later, and they feel in control. They feel that they have confidence in themselves. And the light bulb goes off. This is a piece of our lives. It’s not everything and I can manage it. I live for that because I know it took me 10 years to get to that place with my son because I didn’t have I-FPIES. I didn’t have these doctors. I didn’t have a Fallon on the phone. And when that happens, it’s just everything to me. It gives me the gusto that I need to continue and move forward. It makes I-FPIES that much more important to me.

What makes you hopeful: I am very confident that with the right funding and our incredible team, we’re going to be able to tackle this disease. I know that everything that we do and every person who is part of I-FPIES, whether it’s a trustee member, an executive team member, or someone on the medical advisory board, or even just our patients and families, have so much passion. I am confident that we’re going to find a treatment. I’m confident that we’re going to have a diagnostic. Once we get to that place, we may not find a cure in this lifetime, but if we can leave a legacy, our children are going to have children. And to know that we prevented our children from the experience of living with FPIES and caretaking their own children with FPIES, that’s something that I keep in the back of my mind all the time and pushes me to work that much harder.

Best organization decision: Pulling together the international consensus document was a major feat for us. Many people did not think that we would be able to get it done the way that we did it—pulling in 40 doctors from all over the world and different countries, different time zones, while they donated their time for three years to write a 99-page document was a large task. It shook up the medical community in like a way that shifted the perception of FPIES and deterred the naysayers. It was a pivotal moment that broke the ice and made the value of investment in these patients worthwhile.

Hardest lesson learned: You can’t please everyone. That’s the hardest thing for me because I love the patients and families so much, but sometimes my method might not be the way that they want things done. I want to help everyone. There are some FPIES patients that are outliers that have comorbid conditions, and they go through a much harder time than the patients that have a traditional acute diagnosis. I want to help everyone. Sometimes I’ll run myself ragged doing it. It’s been a hard for me to learn that you can’t always help everyone, but if you keep your focus and keep working hard, down the line, these things will come to fruition.

Toughest organization decision: Finding the best members for our organization. It’s something that I scrutinized for a very long time because anyone who’s part of our organization represents our mission, vision, and goals. It’s not something that I take lightly. Our team is the glue that holds everything together. We have the best.

Biggest missed opportunity: I feel like we’re not working fast enough. Every day, I wake up and I wish we had a better way to help the patients and families. The missed opportunity is every day that goes by that we don’t have those things. That sounds kind of dramatic or inflated, but for me it is a race. I want to race to the finish line, to eradicate this condition, and know that we accomplished our goal.

Like best about the job: I love people and I love the level of intimacy that I get to experience with patients, with caregivers, and with the physicians. As a former psychotherapist, I would have the honor of experiencing intimate connection with my clients. There is a sacred trust factor that emerges. You learn their secrets. You learn their challenges. You learn their strengths. And, in a lot of ways, it is familiar to running I-FPIES. It’s almost like I wear the war paint of FPIES patients and families. I have these beautiful conversations with these patients and families. I live for the connection of that moment when these exhausted and scared moms and dads can let their guard down and feel safe—the moment when I see or feel that sigh of relief on them. That is my favorite part of this role. I live for it. I love everything about it.

Like least about the job: That FPIES exists.

Pet peeve: Greek yogurt and complacency. I cannot resonate with a mentality of “Well, this is the way that it is, and this is how we do it and things can’t change.”

First choice for a new career: As a former ballerina, returning to my roots would be a dream. I am currently opening the first public market, live performance venue and community center in New Jersey. 

Personal Taste
Most influential book: 30 Days to Everyday Miracles: How to Create a Miraculous Life by Jennifer Hoffman

Favorite movie: Great Expectation or The Great Gatsby

Favorite music
: I love music. I’m obsessed—everything from Spanish guitar to metal.

Favorite food: Figs, cheese, and chocolate

Guilty pleasure: Ice cold peanut butter and jelly, cool ranch Doritos, and an ice-cold Sprite on the beach.

Favorite way to spend free time: Hosting a dinner party for the people I love.




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