Ilana Golant & the Food Allergy Fund: Turning Donations into Discoveries

In this World Allergy Week episode, I'm joined by Ilana Golant, Founder and CEO of the Food Allergy Fund. She exposes the significant gap between the prevalence of food allergies and the amount of research dollars devoted to this. Ilana shares how the FAF is stepping into this gap, ensuring that every dollar donated goes directly to research on prevention, treatment, and eventual cures. She reports on the most exciting findings from this year's FAF Summit. 

We discuss:

• How a mother's love became a catalyst for global change
• The food allergy crisis: stats, trends, and what's fueling the growth
• The disproportionately low amount of funding, and how FAF is turning the tide
• Ongoing research on the microbiome and AI predictive model for food challenges

Tune in to learn about this innovative model reshaping food allergy research and how you can be part of it.

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Every Cure – Unlocking the hidden potential of existing drugs to save lives

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com

Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com

Transcript

Ilana Golant: 0:00

I just wanna like scream it from the rooftops, why is food allergy skyrocketing? Why is there very limited interest. Why is there a limited investment? Why are we just asking these questions now? When the numbers have been skyrocketing for 15 to 20 years, this didn't happen overnight. The food allergy epidemic has been growing and growing and it's now reached epidemic levels. And the irony is, although it is at epidemic levels from a population standpoint, from an investment standpoint, it's like a rare disease. So it's an oxymoron, right? It's like we're effectively a rare disease and if you are classified as a rare disease, you're actually able to seek certain funding from the government and other philanthropies that we don't even qualify for. So we kind of, we fall in between in, in many other ways as well.

Speaker: 0:52

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..

Amanda Whitehouse, PhD: 1:14

Welcome back to a new season of Don't Feed The Fear. I appreciate you listening so much and I'm so excited that it is summer and time to move into a really exciting topic. We are going to be talking about choices, and choices bring us hope. They bring us a sense of control. They can also sometimes. Bring a little bit of stress about making the correct choices or the idea that there is one correct choice. So my goal this season is to help you to learn about options that are out there, to help you to navigate the social emotional impact of those choices and those possibilities, and to help you digest the rapid changes that are happening within the food allergy world. I've got a great list of guests lined up for you. I'm pretty sure we're gonna extend far past the summer into the fall, with all of the great people who have agreed to come on and talk to me about such important things. But I really wanted to start today by bringing you a guest with not just a great story, but someone who. It's doing amazing things to change the landscape of food allergy research. There are a lot of people out there doing great, great work, but very few who are building something as ambitious and as impactful as the food allergy fund. The woman behind it. She's not a doctor or a researcher. She's the mother of a child with food allergies, an individual living with food allergies herself, an attorney, a former marketing and PR executive, and government official with the US Department of Treasury. And what she has managed to create with that unique background is a global movement that's funding the very people who are on the front lines of finding a cure for allergies. I want you to meet Ilana Golant because I think it's important to see what's possible when you blend, passion, your unique skillset as an individual and a big picture vision. She's bringing scientists together in the Food Allergy Fund. She's bringing funding to projects that really matter, and she's doing it in a way that's collaborative, transparent, and completely mission-driven. So in honor of World Allergy Week, I'm honored to bring you this conversation, whether you're a food allergy parent, a researcher, a policymaker, or anyone who is impacted or cares about this growing epidemic, you are going to be so excited to hear about the amazing work that the Food Allergy Fund is doing. I want to thank you so much for being here. Ilana Golant is the founder of the Food Allergy Fund doing amazing things and creating amazing innovations in the world of allergy, and I'm so excited to hear the latest.

Ilana Golant: 3:40

Thank you so much for having me. Excited to be here. Of

Amanda Whitehouse, PhD: 3:42

course. I would love for you to start, if you don't mind, telling us the story that amazes me about how one day you woke up and decided to take on this project that you have created.

Ilana Golant: 3:55

Yes, it was my New Year's resolution after months of frustration as a mother, first and foremost, and we were living in New York. My daughter was first diagnosed with food allergies. We moved to dc. We were seeing top doctors in both cities who were giving us polar opposite advice, and it was reminiscent to me of. A children's book that I love. Choose your own adventure. And it's one thing to choose your own adventure in a book. It's a totally different thing as a parent to choose your own allergy adventure. And that's what it really felt like to me that I was left there kind of. Struggling to decide what to do with my tiny 13 month old. Do I expose, do I not expose which foods, which foods to avoid? And so I had more questions than I had answers, and that really set me on my mission. I am a lawyer by training, so I like to ask questions and do my research and kind of figure it out. And so what I realized is that research into food allergy has been grossly underfunded, even as the population numbers have skyrocketed. And so after months of frustration and trying to figure out, okay, well what can I do that about this? I can't go to medical school at this point in my life, although I guess it's never too late. What can I do to really accelerate research funding and find answers? Not only for my daughter, but for everyone living with food allergies. And I myself developed food allergies in the last two years as an adult, and we're seeing more and more adult onset food allergy as well. So I'm in it for my daughter. But I live it kind of from, from different directions. My daughter's allergic to nearly 10 foods. Um, I'm allergic to now multiple foods as well, and it's. Really challenging. And every day it feels like, well, maybe we'll develop another food allergy. And it's interesting, in the five years that I've been doing this work, the younger the child, the longer the list of food allergies. And this is anecdotal, I'd love to confirm what I'm seeing anecdotally. And so much of our work comes from the patient experience, what families communicate to us, what's on their minds, The families are the early detection system, right? Uh, before it gets to the researchers, it's the families who are managing the patients,, who are managing this on the front lines and can really tell us where, where are we headed directionally. And unfortunately, we're not headed in a good direction. You know, food allergy numbers continue to skyrocket with no end in sight. You know, most recently I actually had an anaphylactic reaction during my daughter's food challenge. Um, and this was about a year ago, right before our summit last year, and I had no reason to think I was allergic. So we were at a food challenge and it was a Friday afternoon and she was doing well and my eyes were itchy, watery, and I thought, oh, it's a Friday afternoon. I'm tired. It happens. Um, I didn't say anything.'cause you know, as a mother you just focus on your child and she said, mommy, you really don't look good. And I said. What do you mean? And she says, you need, you should go look in a mirror. So I went to the bathroom. I did not look good. Um, I took a Zyrtec at the allergist's office and then it got progressively worse. And I am grateful to say my daughter passed the challenge. I brought her home and I took myself to the emergency room, and it took me three hours to be seen. And to get treatment. And there I was, someone who knows what allergic reaction looks like. I could advocate for myself. And I was at the best hospital in New York City, right? So I had access to medical care and I was fighting with the ER team to be admitted, to be triaged, to get steroids that I desperately needed. And I kept getting dismissed. It's not a big deal. This is something else. Everything from quote, a gnarly case of pink eye to a virus to anything. I was like, no, no, no. I know about food allergies. I need to be treated now, and the fact that it took me three hours to get what I needed when we know it can be a matter of minutes. Sadly that's where we are in terms of the awareness level. I hear this unfortunately tragically, that so many children get admitted to the ER and they are misdiagnosed. Call it gaslighting, call it, I mean, this is your professional, wheelhouse, but it's, it was really stunning to me. And so at our summit last year, I ripped up my remarks that I had written, and I talked all about this experience and actually showed pictures of myself, like with my eyes swollen shut. I was completely unrecognizable. And quite a few people said to me, you're so brave to show those pictures. And I said, no, I'm not Everyone needs to see the face of anaphylaxis because it is a disease and it has really serious consequences. And so we need to impress upon people how, how serious it is and how we need education across the board.

Amanda Whitehouse, PhD: 9:07

Oh gosh. I'm so sorry that that happened. I'm sure people will be curious. Did you trace it back to contact? Do you think you touched the allergen she was ingesting and. Touched your eyes. Yeah, I think I must have touched

Ilana Golant: 9:17

my eye. Maybe I touched my mouth. I certainly was not sitting there eating it, w hich is also what makes it so scary that it was, whatever quantity it was, it was minimal.

Speaker 3: 9:26

Right.

Ilana Golant: 9:27

Um, but it was. It was quite potent. I've developed a few other allergies and the other ones that I've developed I think are because I cut them out of my diet because of my daughter. And so I hear that so often and I would encourage parents to. You know, not to cut things out of their diet because we do see adult onset food allergy just by not maintaining a food in one's diet. And for me as a mom, I couldn't bring myself in the early years to eat something that could poison my daughter. And so I just couldn't eat it. And as time went on, I didn't really want to eat it, and then I just stopped a nd went years without eating foods. And that was, you know, a mistake for my own food allergy development. But it's what I had to do for myself as a mother. So it's always a cost benefit. We, we all carry the mental load

Amanda Whitehouse, PhD: 10:21

it's one of those things, it's so much easier said than done. Keep it in your diet, keep it in your other kids' diet, and be just horribly, ridiculously anxious all the time. You know, just. It's so simple I was the same way, but, but thank you for making that point because I'm sure there are people out there who don't realize that yet and, and need to have that reminder. I would love your perspective with as much knowledge as you have and as much as you dove into it about the trends in funding food allergy research being underfunded, and if you have insights into why that is.

Ilana Golant: 10:48

That's the million dollar question. Food allergy, there's this inverse relationship between the size of the patient population and the amount of funding that it receives. Whether you look at federal funding or pharma interest or institutional investor interest in any of those spheres, there's a significant mismatch between the numbers. The investment dollars. And that is really not true in any other disease state. And I think that is why we really need to advocate for awareness of food allergies as a disease. And the way that you solve disease is through research. I think food allergy unfortunately has been, you know, labeled helicopter parenting or a lifestyle choice, or you're just anxious about food. I mean, I can't, I'm sure you, you know, as a mother you've heard every version of food allergy. Uh, and, but the real version and the most important version is that this is a disease, right? That we don't have control over. We did not give our children. Our children unfortunately, are living with an invisible disease. It's invisible to the world, but to them it is hyper visible 24 7 on their minds. On the minds of us as parents as well.

Amanda Whitehouse, PhD: 12:02

Absolutely. And you made a good point earlier that, before it has time to go through the research process and be validated statistically, we know. The people who are living with it. We know. In your case a huge example of that is, I know this is going on. I know this is a need. I know there's not enough money going toward it, so I'm gonna take that into my own hands, c oming from the ground up, from the people who are living it Yes. Absolutely. Yeah. So thank you for doing that. You said, I was a lawyer, but you had quite a bit of professional experience coming into this, and so I think of what you've done and I think how could any person just think, oh, I'm going to do this. And what skills might be necessary. And what did you pull in from your other professional experience that allowed you to know where to start taking something like this on?

Ilana Golant: 12:48

Yeah, I mean, I've had a pretty varied career and I think I've drawn on every professional experience in my work with the food allergy funds. So I started my career as a lawyer. I worked in the government, at the treasury department at the height of the financial crisis. So thinking about how do you solve problems that are seemingly unsolvable, from a legal standpoint from a communication standpoint. I then worked in media and PR for a decade and it's, it's the storytelling part of it, right? It's how do we tell the food allergy story outside the community and, I focused a lot of my work in the media world, whether it was representing clients or producing content for CNBC and other brands within the NBC Universal family. I. How do you tell that story to the news consumer? It's the same kind of skill set, right? How do we tell the story? How do we raise awareness in the most kind of highest impact way to move things forward? So drawing on all those skill sets and. I worked in sales and, you know, fundraising is really important. So if I'm raising money from, a premium advertiser, you have to craft the pitch and we need money to fund research. And what makes our structure so unique and has been so important to me since day one, is that a hundred percent of donations go directly to research. And that really sets us apart. From the rest of the food allergy community where our board, you know, takes on our overhead expenses. So any family, whether they're giving$10 or a thousand dollars, that money is going to research and that is critically important to our mission, to our mindset, because we are all families, we're all in this together.

Amanda Whitehouse, PhD: 14:27

On that note though, you left your corporate positions, your professional positions to do this full time, right? So how can you talk about that? That was a big leap of faith for you. I.

Ilana Golant: 14:37

Yeah, and it was my side hustle at the beginning while having other full-time roles, but my full-time passion. And so it's so exciting and gratifying to be able to bring my professional lives and personal lives together. It is truly the best job I've ever had. The most exciting, the most challenging, the most impactful, and it's. I've had to learn a new language, right? Learning science is like learning a new language, learning a new ecosystem, um, earning the trust and credibility within a totally different industry with incredibly smart, talented, you know, researchers, the scientific community and other partners that we work with. So it's intellectually challenging as well and just so gratifying to be able to tell my daughter at the end of the day, okay, I worked on food allergies all day long.

Amanda Whitehouse, PhD: 15:27

I'm so curious what she thinks of your work.

Ilana Golant: 15:29

Yeah, I mean, I think she is quite proud. She spoke at the summit for the first time this year, which was really wonderful to see. And she talked about, her food allergy journey, right? How she wants to eat at a birthday party or eat at school, eat at a restaurant. I mean, the list goes on. And how she is grateful for FAF and for science and really, she. Loves FAF. I mean, she once drew a portrait of different members of our family and drew portraits, right? Hair eyes, you know how you would normally draw a portrait. And then she got to drawing me and she drew the FAF logo

Speaker 3: 16:09

Nice. Instead of your face.

Ilana Golant: 16:11

Instead of my face. Um, and so that was very, very sweet. Aw, that's amazing.

Amanda Whitehouse, PhD: 16:19

Would you talk about what her experience has been like

Ilana Golant: 16:21

We have had instances of bullying and k ids can be mean very sadly. I think in general, food allergies make our kids more resilient, more empathetic, more compassionate. So there is a silver lining. I think they have to be responsible at a young age, more mature, at a younger age. So that is the silver lining. The flip side is that I. Unfortunately kids are bullied for food allergies and there are all sorts of studies that show nearly the majority of kids have had a bullying incident in their lives. And you know, my daughter must have been two and a half years old and she was on the swings at the playground and she had just learned to pump her feet so she could go on the big swing and not go in the baby swing. And so she was on the big swing, so excited that she could finally pump her feet swing on her own. And this other girl who was about a year older, but at the same school as her, walked up to her un, provoked and said, why are you on that swing? You have allergies. You should be in the baby swing. She was too young to fully understand it, but I as a mom felt it viscerally. And I, and I called the girl's mother that evening. She was not at the playground. She was with a caregiver. So I called the mother and I said, look, this happened at the playground, and I just want you to understand how. Difficult food allergies are that it is not a joke. I mean, we see this in pop culture all the time. Unfortunately, food allergies are the butts of many jokes, including Saturday Night Live, among others, and had this conversation with her and I thought that it would really lead her to apologize, to see things differently. And sadly, it led to her dis inviting my daughter from her daughter's forthcoming birthday party, and so it kind of went from bad to worse. And I know from so many families what it's like, right. In terms of their social life sports teams, schools. Unfortunately, everyone has some version of that story where k ids generally can be mean and they don't understand it. For the kids who understand it and are compassionate and inclusive, it is remarkable and those are really wonderful friends and friendships to, to nurture and cherish.

Amanda Whitehouse, PhD: 18:45

It's a horrible story. I'm so sorry for you as a mom. I t's the best why, right? To protect our kids from these things and not only to address the medical side. you're interested in the mental health side of it too, To bring that big picture in is, is a wonderful starting point. To address all those things. How do you start? How do you undertake this? Once you decide you're gonna do it and you set your New Year's resolution?

Ilana Golant: 19:09

Yeah, so I mean my first, I assembled our scientific advisory board. I drew up a wishlist of who are the best and brightest minds in food allergy and adjacent fields, who should be around the proverbial table, thinking about where our money should go, because I am not a doctor, I am not a scientist, and I want to make sure that we create a center of excellence that can really guide us in. Where's the highest impact use of our dollars? And so in assembling the scientific advisory board, we have everyone from microbiologists to psychology, to chemical engineering, environmental health, immuno biologists, clinicians, you name it, because we want this multidisciplinary perspective focused on the problem. Food allergy is not going to be solved with one magic solution. I mean, that would be the dream. That is not the case, right? And so hopefully one day we work towards a cure, but that cure is going to be a combination of approaches, disciplines, treatment, therapeutics, prevention, strategy as well. And so kind of by forming this scientific advisory board from day one. And I made a wishlist of initially 15 names, and I just decided to aim high, right? Like, go big or go home. I'm just gonna go for the best and see what happens. And I cold called them and 14 outta 15 said, yes. We so desperately need this. We need the research funding, we need the multidisciplinary collaborative perspective. So that was kind of the first step. And then since then, it's really been focused on how do we source the best research projects, the best scientists. Our core mission is to fund research. We also serve a really important educational purpose. We host an annual summit. In New York every spring where we bring together about 200 people from all parts of the food allergy ecosystem. So doctors, scientists from around the world, CEOs of early stage therapeutic companies, early stage consumer tech companies, and advocates and investors, media, right? Everyone who needs to be involved in this discussion. And we. Record all of our summits and then we make those recordings available on our website. So I encourage, your listeners to take a look at our website and see not only this past year, year summit, which took place in April, but going back through 10 summits that we've done over the last five years. It's an incredible. Repository of information, research, ideas, and I think most importantly, hope and inspiration, right? I think people leave the summit every year and they tell me, wow, I'm so hopeful because as parents, there's been so little progress over the last 20 years as food auditories have skyrocketed, and I'm very impatient, hopefully in the best possible way, but it's. Enough already. Like we, we need to make progress. And so our summits are really focused on showcasing the innovation, the progress that is happening in the community, much of which we're funding, but also things that we aren't funding that we think are really important, contributions to the field.

Amanda Whitehouse, PhD: 22:22

We can say it again later, but for people who want to go find it right now, it's food allergy fund.org. Right. Very easy to find. Um, and so yes, let's dive in because you're just coming off of your most recent spring summit. So where do you wanna start telling us what you shared and, and what we'll find as we sift through the videos from the event?

Ilana Golant: 22:41

Yeah, I mean the summit was terrific. There was a range of presentations, so we actually kicked off the Summit day with a PSA that we co-branded and co-produced with Nickelodeon, which has been really exciting. It's air, it aired across all Nickelodeon platforms during May, food allergy awareness month, and across billboards in Times Square and Union Station. And so it was a really kind of drawing on my media hat targeted at the children, right? How do we communicate to kids about the kids in their classroom? The average classroom now has two kids with food allergies. That is a startling number. And so we need kids thinking about this first and foremost. Uh, not to take us off topic, but my daughter had a reaction at school recently to a non-food item and the kids immediately recognized it as an allergic reaction and the adults in the room did not. And that was really telling to me that these kids are growing up with food allergy, unfortunately, as part of their daily lives, their daily social circles. And so they figured it out before the adults did. Wow. Um, so which also kind of underscores why we're so excited to have had. The partnership of Nickelodeon in working with us and, and co-branding this PSA. So that was a really fun and exciting way to kick off the day. And then we had, earlier in the week, right before the summit, we hosted the first ever research retreat. And the research retreat was really meant to bring the best and brightest thinkers into a room together to come up with new ideas. And I said to them in my opening remarks. Only half jokingly, we're gonna do this escape the room style, right? You're here with us in New York brainstorming, but we really expect that you're going to come up with new, innovative, collaborative projects coming out of this retreat. And the ideas flying during the retreat it was incredible. And since the amount of engagement, creativity, and collaboration that has emerged, so as part of the summit we. Highlighted a little bit of what happened at the retreat and tried to bring that magic to life to the broader audience. So that was incredible. And we had a series of presentations by early stage companies from around the world, from the uk, from Australia, from Germany, and across the United States, talking about everything from analyzing your breath for gut health. To an inhalable epinephrine, to a new version of Xolair to the interaction between mold and food allergies. So just a really wide range of companies and business models and new kind of infant formula that takes out the allergenicity of milk, which 20% of infants in the US cannot consume cows based, milk formula. And so this is a formula that simulates kind of. What it would be, but without the Allergenicity, which is pretty incredible. So a wide range of really cool and interesting companies. And then we had researchers from across the country, across disciplines present. We unveiled three projects that we're funding, one of which is the first AI predictive model for food challenges. So, you know, as parents, we know how anxiety inducing the food challenge is for. The parents and for the kids as they get older and kind of more cognizant. I mean, I remember the first food challenge that my daughter was really aware of. She must have been around five years old. Until then, she kind of didn't really understand what was going on, but at five, she suddenly got very upset with me. I mean, totally reasonably and, and to be expected, but like, mommy, why are you doing this to me? You told me I can't have this. That's dangerous. How could you do this to me? And so, you know, there's that trust between a parent and child that the food challenge really challenges. And so I. We are funding the first AI predictive model, uh, at the Teknion to look at all of the food challenge data that is available, as well as certain data sets that we have worked on in collaboration with Cincinnati Children's Hospital to start to predict food challenge outcomes and take the guesswork out of it for both the doctor and the family and the early results. You can watch the video on our website. It's. Truly remarkable, but also underscores our interest in bringing AI and other novel technologies into the food allergy sphere. Um, another study that we shared is looking at the level of comorbidities with food allergies. So I mentioned earlier, you know, anecdotally again, like what do we hear on the front lines? Well, we hear the younger, the kid, the longer the list of foods. But we also hear the longer the list of other allergic conditions, whether it's eeo, e, F, PIs, asthma, the list goes on. And so we asked the team at Northwestern, which is the only epidemiological team in the country to look at this level of comorbidity and is our anecdotal sense. Correct. And I am sad or happy to report that it is correct, right? Like kids are dealing with more and more. simultaneous chronic diseases, like what accounts for that? And so that kind of ties with a third area that was, a project in, in the gut microbiome. And we actually had quite a few presenters focused on the gut microbiome as the common denominator and what can be done from symbiotic therapies to kind of infancy and prevention strategy, but a, a theme throughout the day was definitely focused on the gut microbiome and what is going on with the gut health of food allergic kids.

Amanda Whitehouse, PhD: 28:38

Wow. That's all sides of it. You're addressing, diagnosis, root cause, preventing eventually would be the goal and treating now, which is all angles that we need to be approaching it from. So it does sound very exciting. What do you think you left with the most excited about in terms of timelines. Will be out there and helping and making changes soon.

Ilana Golant: 29:01

Yeah. I mean, science takes time, right? Right. So I think in the next three to five years we'll have really significant breakthroughs. We're already seeing. Improved therapeutics. We're seeing needle free options for epinephrine. But in terms of real cutting edge breakthroughs that are going to modify the disease, I think we're three to five years out. Which, is not soon enough, right? As a parent, I wish it was yesterday, but on the other hand, I think we've really accelerated the research paradigm, the funding, the interest in it. And so, it takes a village, right? And for us, no one wants to join the food allergy club, but once you're in it, it's an incredibly dedicated, passionate, committed community. And so I think as a community, we have a lot to be excited about and hopeful for, but science takes time. I wish, I wish we could speed it up and we're doing everything we can and like I said, using ai, using CRISPR technology. I mean these are all things that we are working into the work that we're doing. It was an important part of our research retreat as well. Another area that we're working on that is gonna be faster and really exciting is we're the only repurposing program for food allergy in the world. And what that means is we're taking drugs that are already approved by the FDA, so we know they're safe and testing whether they can be repurposed and used for food allergy. So we're already funding two repurposing studies when at Mount Sinai and one at Northwestern. And we'll be announcing a few new repurposing studies. Later this year. Um, but that is kind of the fastest way in some ways to get it in patients' hands. And I was really inspired by, uh, David Fajgenbaum to do this. So David is the founder of Every Cure. He has a remarkable personal story that is being made into a movie now. But he was diagnosed with a rare disease and given very little time to live and went about finding a drug that could be repurposed to save his life. And it saved his life. And now he's made it his life's work to continue repurposing drugs and they're the largest AI driven platform to repurpose drugs. And they helped kick off our research retreat this year, which was really, really great to think about, okay, how can we all be working towards repurposing while we're also trying to find new solutions,

Amanda Whitehouse, PhD: 31:32

right? So since those medications have already been demonstrated to be safe and are already FDA approved, that's a fast track to just demonstrating that they're effective for other things?. Yeah. And

Ilana Golant: 31:41

they're, and they're more often than not, they're generic. So they're cheaper. And already sitting on your shelf at CVS,

Amanda Whitehouse, PhD: 31:49

is that the reason that maybe that hasn't been done? Is it a financial thing where if we can't create a new medication, why would a pharmaceutical company devote the research to repurposing it? Yeah,

Ilana Golant: 31:58

from a financial incentive standpoint for pharma, once a drug lose, its, its patent and goes generic, right? Like. There's what's known as a patent cliff and they're not gonna make as much money.

Speaker 3: 32:10

Yeah.

Ilana Golant: 32:10

Um, and so that's where repurposing steps in, in the nonprofit community, you know, with us, with every cure, really thinking about how we can advance these drugs for other lifesaving purposes.

Amanda Whitehouse, PhD: 32:24

Some of what I've heard about that is a lot of overlap in medications that are being used for cancer or cancer research and how that applies in food allergies and other allergic conditions. Am I correct and if so, can you explain that a little bit more? I think a lot of us from the outside are flabbergasted by that.

Ilana Golant: 32:39

Yeah, I mean we're, we're looking at everything from cancer drugs to eczema, drugs, um, diabetes, metabolic disease. So it really ranges and we're encouraging our researchers to think as creatively as possible to use AI to generate ideas and hypotheses that obviously need to be tested. But we're taking a wide lens and so. I think all disease drugs are kind of on the table. There's one drug that we workshopped at our research retreat where one researcher put the idea forth and everyone universe is like, oh yes, absolutely. Like, why haven't we considered that? And there's just kind of unanimity around it. And. We're not always going to get to a resounding like, yes, yes, yes. But that is what we're thinking about. We're looking at a cancer drug now as well. We just don't know where the solution's going to come from and so I think keeping an open mind, a creative mind is really important. And by the way, it could be a combination of drugs that ultimately needs to be used and it's not gonna be one drug.

Amanda Whitehouse, PhD: 33:49

Right. So many bodily systems are involved with food allergy, so that would make sense. It's so complex. You mentioned that there are multiple gut microbiome approaches that you're working on. Can you share with us the specifics? I know one of them is one that people love to talk about fecal matter transplant.

Ilana Golant: 34:05

Everyone likes to talk about poop. Um,

Amanda Whitehouse, PhD: 34:08

I do it all day long with the kids I work with in therapy, so lots of potty talk. Absolutely. Um,

Ilana Golant: 34:13

so we are funding the first fecal transplant for food allergy at Boston Children's. We have funded two phases of that project, and most recently we added an additional phase looking at the metabolomics, metagenomics of that work. And so the idea with a fecal transplant is your gut or one's gut has gone haywire. And so the best analogy I like to think of is if our bodies are computers. Our body has hardware and it has software updates, right? Inputs from the environment, food we eat, et cetera. And so our hardware can't keep up with all the software updates that have been happening. And so something has gone wrong in the hardware. We need to fix the motherboard. And so if we think of it in those terms, and the fecal transplant is really trying to reprogram the gut to get it to a place where it is. Less dysregulated and tolerant of the allergens, and we're seeing really, really promising results there. And as part of that work, we've also discovered that there are various bacterial strains that either are very low or missing entirely for food allergic patients. So how do we think about replenishing that bacteria? So in any work that we do, there's like the initial project that we're funding, but what if there's an interesting finding whether it's intentional or accidental, we like to follow those detective clues as well and leave no stone unturned. So fecal transplant is, is really interesting. Fecal transplant. Is still not widely used as a therapy. It is only approved for c diff in the US. it is approved for other conditions globally. And so this is the first kind of food allergy, fecal transplant and it's really, really exciting. There's a symbiotic therapy that we're funding at the University of Chicago, which again is kind of focused on the gut microbiome and how. You replenish or repopulate the gut? One of our scientific advisory board members, Marty Blazer, his whole thesis and has been for like 30 years, but is now fully proven and established, is early childhood use of antibiotics leads to onset of various early childhood diseases including food allergy, asthma, autism, and others. And so the overuse of antibiotics is real. It is significant for children and adults alike. And so his book is titled Missing Microbes. It's been translated into more than 20 languages. And you know, I just use that as an example of, that's something very simple, where reducing antibiotic consumption can help, like that can help one's gut. Now. Right today that we can take immediately. Yeah, exactly. Or probiotics, right? So those are things that can be done immediately. But I think if you look at the through line from early childhood disease to aging disease, Parkinson's, Alzheimer's, we know the gut is implicated in both. And then in between, cancer, unfortunately is skyrocketing in people under age 45 or even under age 40. And so if you look at kind of that common denominator all the way through, it is. You know, heavily gut and inflammation related. And so what can we do to change that environmentally, diet wise, therapeutically? It's gonna take a lot of tools in the toolbox. It's not gonna be one fix.

Amanda Whitehouse, PhD: 37:46

Absolutely. And that takes me back to this idea of, cause and prevention and as you said, it's been too long, it's taking way too long for us to understand this. But that sounds like one of the biggest areas of getting closer to understanding that. Am I correct with the gut microbiome and antibiotic use and, and compromising the gut at an early age. Is that a movement toward the ultimate question of ending and preventing food allergies?

Ilana Golant: 38:13

Yeah, I mean, if we knew what the underlying cause or causes are, we could accelerate progress. There was a recent discovery around bile acid pathways or a specific cell type that one of our grant recipients, discovered around specific cells being activated. Right. We just don't, I, I really don't think it's a singular cause. Right. It's kind of the perfect storm. But even within this perfect storm, we still don't have enough information on which of the storm clouds are like the most dominant ones. There are hypotheses that over the years have been, disproven, There was a time when we thought, okay, it's a hygiene hypothesis. We're just too clean. As a society that is no longer the belief, right? The gut piece is a very important piece of the puzzle for sure. It is not the entirety of the puzzle. It's kind of the gut coupled with environmental exposures, food production, manufacturing intake, along with many, many other contributing factors. And then kind of the actual. We know what happens in anaphylaxis, right? But what we don't know is how do we stop it? And so from my perspective as a mother, we can all live with food allergies. As long as we can get rid of the anaphylaxis piece. We can all live with hives, we can all live with vomiting, diarrhea, et cetera. That is not what keeps me up at night. It's really the anaphylaxis that keeps. Food allergy parents up at night. And so if we can figure out what mechanisms can be turned on or off and what the causes of those different mechanisms are, then we're one step closer.

Amanda Whitehouse, PhD: 39:58

That's a great point because short of a cure, that's the problem. It's the life-threatening nature of this disease. None of us want our kids to miss out on certain things, but we can avoid pretty well and still have a full life and find alternatives. So on that note could you say more about the research confirming that comorbidity is on the rise, not just the number of food allergens. What else are they noticing when they look at the data?

Ilana Golant: 40:23

So the population data is still quite limited. We don't have a patient registry, for example, like if you look at other disease states, we're missing the basics in food allergy. We don't have good reliable diagnostics other than the food challenge, which. Yeah, we already touched on, we don't have a patient registry that actually collects the data in a way that is easily usable, searchable, analyzable. Um, not sure that's a word, but, uh, but, but these are the things that we lack, right? And so we're starting already behind and as a disease state, as a community, as a research piece. And so. We're kind of trying to leapfrog that and figure out, okay, how can we get to more answers? And one, another area that we're really interested in is biomarker discoveries. So if you talk about asthma, for example, 30 years ago, you would say, kid has asthma. We now know there are different subtypes of asthma and. You treat those types differently based on the phenotype of the patient. We don't know anything about food allergy, right? Is food allergy one disease? Is it. 20 is each food its own disease. We have this, speaker at our summit who mentioned breast cancer we now know is more than 20 diseases. Is food allergy more than 20 diseases? Is it one disease? Can we start to create biomarkers. And so that's something that we're really interested in as well, is how do we start to identify different patient types and subgroups, and what does that tell us about what causes the disease? How can we prevent it? Not only in the next generation, but how do we prevent the next allergen from forming, right? Most kids aren't immediately allergic to 10 foods. You kind of learn about it food by food. Often, rapidly within months of each other, but sometimes it takes years and times, you know, everything is fine or at least stable, and all of a sudden you develop a new allergy. Why? These are all unknowns and we're trying to answer as many of them as we can.

Amanda Whitehouse, PhD: 42:38

So many questions. With other medical concerns how does a patient registry happen? Why is there not one for food allergies?

Ilana Golant: 42:47

I don't know. I mean, I wish there had been one for the last 15 to 20 years because you could really build that data. Normally it comes from the nonprofit community, but in the food allergy community, kind of the existing nonprofits, 10 or 15 years ago, didn't self-organize to create a robust registry that we could all benefit from. Why? I don't know.

Amanda Whitehouse, PhD: 43:09

Okay. Another piece of this that I'm curious about is funding. I mean, you mentioned that if, if. Everyday person or families donate, all of that money will go to the research. Where's the motivation coming from to fund what you're doing? Families? Is it, is

Ilana Golant: 43:22

it all mostly that first and foremost, it's families. Families who want. Want to make a difference, at varying levels and size of donation, obviously, but it's families.

Amanda Whitehouse, PhD: 43:37

That's amazing.

Ilana Golant: 43:38

Yeah.

Amanda Whitehouse, PhD: 43:39

Are you matching financial investors with people who are potentially developing treatments as well? Okay. Okay. So that's what happens at the summit.

Ilana Golant: 43:47

Yeah, part of the summit is really giving a platform to investors and companies to meet each other, match-make, and, hopefully grow investment in those companies because they're a really important part of this ecosystem. Pharma, big pharma is generally not. Interested not invested in food allergy at these early stages. There are some exceptions to that, but by and large it is happening in the biotech world, that is not happening in big pharma. And so for us, we're really focused on how do we surface those companies. We've had 40 companies from around the world over the past few years present at our summits. Some of which are exclusively focused on food allergy, others who have really important adjacent t ools or expertise where it can be applied to food allergy. And so for us, it's really kind of creating that platform for the companies and the investors to meet and hopefully connect.

Amanda Whitehouse, PhD: 44:46

That's amazing. I just have to say again, there's so much innovation happening. It's an exciting time for the food allergy world and all of these new treatments and medications that are coming out. But to me, what you have done is so innovative to just create that space for funding projects and matching researchers and investors and getting the community involved. I just want to thank you for that because it really is so different from what a lot of other people are out there doing.

Ilana Golant: 45:10

That's, yeah, no, we tried to break the mold and I think we've done that quite successfully and it's just really exciting to see how much momentum we're gaining and there's now increased interest and increasing public conversation around food allergy as well.

Amanda Whitehouse, PhD: 45:28

And that's a piece that I wanted to come back to. You mentioned that several times. We have a great community, right? But what's important is to get outside of that community, like you said, with your Nickelodeon campaign, getting other kids and targeting information to them.

Ilana Golant: 45:41

We really need to reach outside the community to affect change. At this point, the food allergy numbers are so high that everyone knows someone affected by food allergy, the way they know someone affected by cancer, sadly, like they're in the same place in that respect. It's one degree of separation at most. I would like for food allergy to get the same level of attention, seriousness, interest as cancer does outside the community. And people are so, you know, rightfully so, obviously motivated to figure out the cancer puzzle, but if we can figure out the food allergy puzzle alongside it, or even earlier in life, I think it will have clues for the cancer puzzle as well because of this kind of gut inflammation, common thread. Yeah.

Amanda Whitehouse, PhD: 46:28

Could that be a key to increasing that motivation?. Why, why do people care so much more about cancer than food allergies?

Ilana Golant: 46:35

I think it's been the storytelling around the disease. We have donors whose kids are in their late thirties, right? And so the idea that a 39-year-old and my 9-year-old are kind of sitting in the same place is A: unacceptable, and B: leaves me speechless because that is not the case in cancer, right? In 30 years we've made huge, huge strides in cancer research. But that kind of comes back to the storytelling of like, how do you get society writ large interested in the disease, involved in the disease, and kind of go from there.

Amanda Whitehouse, PhD: 47:14

So we can obviously watch and learn all the videos and learn about your work and follow along. We can donate to you, right? And, and, and support these projects. And then how can we, as everyday people do what you just said and share and spread the word?

Ilana Golant: 47:30

Volunteer, right. I mean, we're, we're so grateful to and reliant on food allergy families who volunteer their time, their effort, their professional skill sets, but to spread the word in their communities about the importance of food allergy as a disease and that it is a, this is a solvable disease. It is a solvable problem. It is perhaps more so than cancer, but it has really suffered from a lack of investment and attention. And so if we can get the attention where it needs to go and the investment where it needs to go. Yeah. My hope is to go out of business as soon as I can.

Amanda Whitehouse, PhD: 48:09

I, I, I think we would all agree with you. You're giving us so much hope with what you're doing that that is possible and that is realistic. I think sometimes we buy that, um, story that we hear in society, and I think we kind of accept like, okay, food allergies are just for life and this is something chronic we'll always have to manage. And you didn't accept that. I love that. Yeah. What, what else do you wanna share about what you're doing or what we should know?

Ilana Golant: 48:33

We've touched on, on so much and, and to your point, I think we should be hopeful. There is a lot on the horizon to be excited about. Food allergy really impedes one's quality of life, not only for the patient, but for the family as well. And so there's a lot to be hopeful and it really takes everyone to be involved and to affect change. So I'd encourage folks to, watch our summit content, volunteer, donate, get involved. We're really always very eager to hear from families and a bout how they can help the organization and most importantly, how we can help them. Right? What are they seeing? What are they feeling? What is the patient experience and how is that evolving? And so all of that is incredibly helpful to us as we continue to grow and, and make a difference.

Amanda Whitehouse, PhD: 49:23

That's amazing. You wrapped it up perfectly, I think. I think we'll leave it at that. But I wanna thank you so much for taking the time to share all of it with us and share the excitement and the hope we need it. Thank

Ilana Golant: 49:32

you. Thank you so much.

Amanda Whitehouse, PhD: 49:34

I hope that you're feeling as inspired as I am after hearing that conversation. What the Food Allergy Fund is doing isn't just hopeful. It is strategic data-driven and focused on real results, and it is powered by people like you and me who want better for our kids, for our communities, for the world, and everyone impacted by allergies. So if you're wondering how you can help, here are three action steps that you can take right now. Number one, donate if you're able. Any amount helps because 100% of the donations to the Food Allergy Fund go directly to research that is rare and very powerful. Every dollar moves us closer to prevention and a cure. So you can go to www.foodallergyfund.org to learn more, and you can also easily find the Food Allergy Fund on social media by searching for the name of the organization. Number two. The Fund's recent Summit brought together the brightest minds in allergy research to share their progress and findings. You can watch those sessions and see what breakthroughs are happening right now by checking them out at the foodallergyfund.org/summit. And number three, please share this episode. Help to raise awareness by sharing this conversation with someone you know who cares about food allergies. All of us who are invested in this topic need that hope and encouragement that real progress is being made. Thanks again to Ilana Golant for all your work and for joining us here. And thank you to everyone for listening to Don't Feed the Fear.

51:00

the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.