There’s only one way to develop treatments and a cure for food allergy: research. And there’s only one way to foster research: money.
The Food Allergy Fund (FAF) is the primary organization funding research into solving the food allergy crisis, and their work supports the science toward the development of treatments and diagnostics that will eventually lead to a cure.
FAF is sponsoring Food Allergy Fund Research Week, which will take place in New York City from April 28 to 30. The week will culminate in the much anticipated FAF Summit on April 30, to which everyone is invited. You can find more information at foodallergyfund.org.
To learn more about FAF, we invited Ilana Golant, the Founder and CEO, to discuss the organization and share examples of cutting-edge projects currently being funded by it.
Here is a video of that conversation, followed by a complete transcript. Be prepared to be blown away by the progress that is being made behind the scenes:
Transcript
Dave Bloom, CEO, SnackSafely.com: Hi. I’m Dave Bloom, CEO of SnackSafely.com. If you follow our blog, you know, we cover all things food allergy, and one of the topics I most like to cover is research into therapies and a cure for food allergy. And there are many promising developments on the horizon.
Now you might think you know which organization is the chief funder of food allergy research… and you might be wrong! That organization is in fact, the Food Allergy Fund, and here to talk about the many projects that the Food Allergy Fund currently supports is the CEO and founder of the fund, Ilana Golant.
I hope you find the conversation hopeful and informative. Here it comes…
Hi, Ilana. Welcome.
Ilana Golant, Founder and CEO, Food Allergy Fund: Thank you. Thank you so much for having me.
Dave: Before we start talking about the Food Allergy Fund, why don’t you tell our readers a little bit about yourself personally?
Ilana: Sure. Well, you know, my background ties into the genesis of the Food Allergy Fund as well.
So I, have a wonderful nine year old daughter, and she was diagnosed with anaphylactic food allergies when she was 13 months old. I’m a lawyer by training as a corporate lawyer in New York and DC, worked at the Treasury Department at the height of the financial crisis, and then spent a decade in media and PR before pivoting my professional journey to my personal passion, which is food allergies and solving food allergies not only for my daughter, but for everyone suffering from food allergies.
Dave: So before we get into the specifics about what the Food Allergy Fund does, tell us a little bit about when you started the fund and why you started the fund.
Ilana: I started the fund five years ago. We were living in New York and my daughter was first diagnosed. We then moved to DC and I saw two totally different food allergy experiences as a parent in terms of resources, knowledge, access to care, etc. and that really motivated me in addition to kind of getting conflicting medical advice of what do I do with my tiny little 13 month old, who seemingly became allergic to a multitude of foods overnight?
And so I was getting conflicting medical advice on what to do. And I quickly realized that there are so many unknowns about food allergy. And it’s not that I wasn’t getting the answers, it’s that we don’t have the answers. And so that really motivated me to go and seek out the answers. Short of going to medical school myself, kind of putting down my lawyer hat, I said, okay, well, let me research what I can do to make a difference.
What has made a difference and really move the needle for other diseases and other patient populations. And because I was living in DC at the time, I had the opportunity to really go around town and meet with the various other organizations — Crohn’s and Colitis, American Cancer Society, Juvenile Diabetes — to really learn from their success. What… what worked for them instead of trying to reinvent the wheel, how do we apply those models of success to food allergy and really accelerate research, funding and innovation.
Dave: So tell us about the Food Allergy Fund… what it does, what kinds of research you invest in?
Ilana: We’re a nonprofit. We’re really focused on funding cutting edge research that is going to not only give us a better understanding of what is causing food allergies, but finding treatments and therapeutic options as well. And ideal world, we find a cure, and we go out of business as quickly as humanly possible.
But that really is what motivates us. My daughter, as I mentioned, is nine, and so I’ve set a personal goal of finding treatment options by the time she goes to college, and I think it is very doable. And so what we’re working towards is finding those cutting edge researchers who are creative, strategic thinkers, bringing folks together from across disciplines, from immunobiologists to molecular engineers to chemical engineers, microbiologists, and having everyone think collectively about what can we do to really move the needle to develop research.
And so, for example, we’re funding the world’s first fecal transplant for food allergy out of Boston Children’s Hospital. And the idea there is to reprogram the gut. The gut microbiome is significantly implicated not only in food allergy, but in a variety of chronic diseases. And so if we can intervene and try to start to reprogram the gut, it can have not only great benefits for food allergy specifically, but hopefully lifelong health benefits as well.
We know that food allergy has a significant number of co-morbidities, ranging from asthma to EoE to other chronic conditions. And so all of that kind of starts with the gut. And what we’re seeing kind of from a broader public health standpoint is Alzheimers, Parkinson’s and the early childhood diseases., the gut is implicated in both early childhood and aging.
And then in between what we’re seeing as cancer is skyrocketing in younger people under 50 and kind of the through line for all of that is inflammation, gut dysbiosis. And so we’re really interested in what can we do with the gut. So in addition to the fecal transplant, we’re finding a symbiotic therapy at the University of Chicago.
We’re also doing a variety of new diagnostic tools, at CHOP for example, in addition to looking at immunomodulators and how we can really retrain the immune system and get to a place where our kids are living better lives. And so we fund research that is from preclinical all the way through phase two.
And we’re agnostic in terms of kids and adults because our children will become adults. And so whatever we’re looking at needs to work equally well through adulthood, especially if it is going to be a lifelong treatment option for them. And I will also say everything that we look at has to be multi allergen in scope, right?
The majority of patients are now allergic to multiple foods. And so… and I will say anecdotally kind of in the last few years that I’ve been doing this work, the younger the child, the longer the list of food allergies and the longer the list of comorbidities. So we really need to take a comprehensive look at this, and make sure that we’re not solving for peanut allergy or we’re not solving for milk because there is no such thing as, you know, a kid who’s only allergic to one food.
I mean, I have not met that child, unfortunately, in the last few years. And so we really need treatment options that are going to solve the disease at its root cause and thereby kind of solving it from a multi allergen perspective as well.
Dave: Right, right. We’re coming across kids who have and adults who have 20, 30 allergies, and it’s terrifying.
But you’re also looking at repurposing existing drugs, correct?
Ilana: Yes. We launched a repurposing program last year, which we’re really excited about, and we’re expanding this year. And the idea there is, if you take a drug that’s already been approved by the FDA, you know that it’s safe. And so you can really focus on efficacy, right?
Is this drug going to be effective for food allergy as well? It is cheaper. The drug is often generic. And so the speed at which we can get that into patients hands is much faster. So we’re funding two repurposing projects, one at Northwestern and one at Mount Sinai already. And we’re looking to add a few additional repurposing studies this year, which is really, really exciting.
And the drugs that we’re looking at, you know, range from, yes, weight loss drugs to cancer drugs and seeing what the implications of those drugs are that really have, you know, important overlap with food allergy. And the potential for repurposing is really, really powerful. So we’re excited about it. And we’ve had the pleasure of working with Every Cure, which is the largest repurposing, AI driven platform that was spun out of Penn, and they’ll be participating in our upcoming research retreat as well.
Dave: Very exciting. Can you talk a little bit about examples of research that you folks have been involved with that are already bearing fruit?
Ilana: Yes. So the fecal transplant work, we started really early days with that work. It has now gone all the way through phase two and is ready for a multi-site clinical trial, which is kind of really one step from putting it in patients hands.
There are other projects I mentioned this diagnostic platform that we’ve been working on with CHOP. We started in the EOE space and we’re moving into food allergy as well, but kind of on the EoE track. And EoE, you know, is now a significant comorbidity for food allergy. And there’s a lot of kids who are dealing with both conditions.
And so that’s a really great new diagnostic tool that will also help us identify biomarkers. And that is very close to being in patients hands imminently. So that’s really exciting. And you know, the diagnostics are so flawed for food allergies. I mean, I’ve been through so many food challenges with my daughter, and I know how anxiety inducing it is for the child, for the parents, for everyone involved.
And we really need alternative diagnostics that are accurate, that are reliable. And in the course of developing these diagnostics, we also hopefully we’ll start to get more biomarkers and start to really understand what… what is making these kids tick. We’re also working on a really exciting AI project related to oral food challenges with the Technion in Israel to figure out, okay, can we predict whether a food challenge is necessary, if it is necessary, what is the likelihood of success?
Can we personalize the dosage based on clinical history and really using the power of AI, which is so much better than any one clinician, then kind of scaling that computing power to look at all the open literature out there, as well as taking data from clinical medical records and start to piece together through a predictive model and take some of the guesswork and anxiety out of it, both for patients and doctors alike.
Dave: Very exciting! If we can eventually do away with the with the oral food challenge, that would be tremendous. So you folks are busy funding many, many projects. Talk a little bit about how you decide which projects to fund.
Ilana: We fund in three different ways. We have what we call innovators grants. Those are seed grants to help us pilot and test new ideas.
Some will work, some won’t. But that’s the beauty of science, right… it’s that we really need to experiment and see those projects. So in many cases, we’ve started kind of with a seed grant and grown with the project all the way to multi-million dollar funding. And so that’s kind of our innovators grant. We run thematic RFPs. So we’ve had three recurring themes that aren’t going anywhere.
One is prevention. The second is gut microbiome. And the third is the repurposing program that I mentioned. And the third bucket is researchers coming up to us proactively. You know, now that we have established ourselves as the leading nonprofit dedicated to funding research, researchers come to us on a daily basis with incredible ideas. I mean, if we had unlimited resources, we would be funding even more work than we currently are.
But the researchers now come to us proactively, and they’re coming to us globally as well, which is really exciting that they now see us as the leader in cutting edge research. And we get proposals every day. In terms of deciding what to fund, we have an incredible scientific advisory board that is made up of experts across disciplines, across institutions, and they help us prioritize — not only from a strategic standpoint — what should we be looking at in terms of, you know, repurposing gut microbiome, big picture areas, but then also evaluating on a project by project proposal basis of where are we going to see kind of the biggest impact. And so for us it’s, you know, it’s a cumulative process. We’re always talking to researchers, getting new ideas and then also matchmaking within the research community, we will sometimes get proposals that are really similar in nature.
And so we encourage collaboration and say, you know, if you work together and you share the data and you share that learnings, we can actually move this much more quickly instead of duplicating efforts. And so part of it also is playing, I guess, an air traffic control role for, for lack of a better term, where because we’re so fortunate to see what researchers are working on, you know, with their permission, we say, oh, you know, you should talk to so-and-so.
Let’s see if we can find a way to to collaborate and move together more quickly. And that’s really what’s needed in this space, right.
Dave: Because you need you need a lot of coordination when you’ve got a lot of different efforts going on. Maybe you could tell us a little bit about how you fund, how do you how do you raise funds are and how you decide to distribute them?
Ilana: So 100% of donations go directly to research. That has been really important to me since starting the organization. Our…
Dave: I’m sorry, say that again one more time.
Ilana: 100% of individual donations go directly to research. That has been really important to me since day one of starting this organization. If any family is going to give money, whether it’s $10 or $10,000, I want that money going directly to research. Any expenses that we have as an organization are fully paid for by our board, so that all families can be assured that their money is going directly to research, which is the highest impact use of, you know, charitable donation dollars.
So we’re really, really, proud of that. And committed to it. So our, you know, donor base is families who are personally impacted and patients, right, adult patients as well, who really want to see change and change can’t happen soon enough. As the saying goes, the patients are waiting. So for us, that’s really what drives our funding.
We’re so appreciative of families that put their trust in us to accelerate research. And, you know, we don’t have to worry about overhead expenses and supporting a large organization. It’s really, really focused on where is the research, where is it happening. And then how we allocate resources is, you know, a combination of strategic planning of what are the big picture areas and programs we want to focus our efforts on, coupled with finding proposals and researchers who are really going to advance these large, objectives as well as possible.
Dave: I think what you do is so important because, you know, people who have less and less money to donate nowadays because of circumstance, because of the economy. They want to know that they’re funding research and they’re not funding this huge organization behind the research. So, you know, they want to know that if I’m if I’m putting in $10 or $100 or $1,000, whatever it is, that money is going directly toward researching therapies and the cure for food allergy. I think it’s wonderful.
Ilana: Yes.
Dave: And you think it’s wonderful, too, obviously.
Ilana: Yeah. I mean, this is yeah, it’s so critical to our mission. It’s been like that since day one. And we’re really committed to that.
Dave: Talk a little bit about how you keep your overhead low. How big is the organization? What do you do that’s different from other major organizations that fund research?
Ilana: Yeah, we’re a really nimble team. We also rely heavily on parent volunteers. Right. It takes a village and we have an incredible village in the food allergy community. No one wants to join the club. But once you do, you know as well as I it is an incredible community. And so we’ve been really lucky to have volunteers leverage their professional skill sets, to really help us advance our network building, not only from a donor standpoint, but reaching out to researchers, cultivating partnership ideas, really looking for opportunities to grow and strengthen not only within the food allergy community, but outside.
We really need the rest of the world thinking about food allergy and prioritizing it. It’s 10% of the population. It is a staggering number and growing. And so we really need folks outside just as passionate and interested in effecting change. And I will say we’re going to be announcing a really exciting media partnership at our summit in April, which I think will raise awareness nationwide.
Dave: So, it’s very exciting. I guess you’re not ready to talk about that just yet, but why don’t you talk a bit about your research week coming up.
Ilana: So, we’re really excited to launch our inaugural research week on April 28th through 30th in New York City. We’re kicking off the week with a researcher retreat. We’ve never done this before.
This has never been done before for the community. And so we’re bringing together invite only researcher to researcher across disciplines across institutions, across technologies, from AI to CRISPR and others for, you know, the most effective brainstorm possible. I kind of joke that it’s escape the room style, right where we’ve, curated this group very, very carefully over the last 12 months.
And we’re going to put them all together and they can’t leave until they come up with cutting-edge collaborative ideas, new projects that we can fund. And so that’s really the impetus. And we’re really excited to kick off the week this way. And the response from the research community has been overwhelming. As I said, like, we’ve been very careful about who is participating so that we get the best use out of this retreat possible.
And it really is action driven. Every minute of the retreat has been programed with an idea, a facilitator, a response. And so we want actionable outcomes. And that’s kind of our M.O. generally is everything needs to drive towards action. So we’re going to kick off the retreat for researchers only. We’ll have a public facing event on the evening of April 29th, where all the researchers who will be in attendance at the retreat will be in attendance.
And so patients can freely interact with the best and brightest minds from around the world. And it’s really an unparalleled opportunity to get access and insights to the most cutting edge thinking possible. And then we’ll cap off the week with our annual summit. Which is always one of my favorite days of the year, and our summit where… Mine too by the way.
This is our 10th summit. Believe it or not. We have been doing it annually. We doubled up during Covid. We continue to do virtual programing throughout Covid. In fact, we were the first in the food allergy community to pivot to virtual programing. So this will be our 10th summit and I think it’ll be the best one yet.
And for those who haven’t been to the summit, you know, I really encourage you to come. It’s a combination of hearing from the top, top researchers from around the world on what they’re working on. You know, a lot of the work that we’re funding, but also other work that we’re not funding, but we think is really important to showcase, CEOs of early stage companies from around the world working on a variety of new therapeutics and consumer technologies.
And we have an incredible lineup of companies for this summit: FDA and NIH officials, investors and media advocates are really bringing together the entire ecosystem, but equally bringing in people who need to be involved in meeting, engaged, need to learn. And so the summit is open to the public. Anyone can come. But we also spend a lot of time recruiting attendees for people that we think, you know, you really need to understand food allergy because it really touches on interests that you already have.
And so we really want food allergy to be on those people’s radars as well. So we’re incredibly excited about our first research week. I jokingly said to someone, you know, research week is the new fashion week in New York. I hope it will be as as cool. But we’re really excited about the week and its potential. And I can vouch for the, you know, I can vouch for the summit.
Dave: It’s one of the most exciting events on my calendar. I’m a geek, true, but also, it’s very hopeful. I mean, you can actually see and hear from people that have their hands deep in the research and you can hear about how things are progressing. It really is wonderful and very, very hopeful.
I don’t want to ask you to choose your favorite child, but do you have an example or two of research that you’re really excited about?
Ilana: You know, I don’t want to pick favorites, but all of all the research that we fund, we’re really excited. I’d say, you know, in terms of our strategic focus, I think the gut microbiome is really important. And we have a few projects that fall under that umbrella. I think the gut is so important to understand. The dysregulation happens so early in life.
You know, my daughter had her first anaphylactic reaction at 13 months, and then it was kind of downhill from there. And so many families that I meet with food allergy, really 50% of allergies start in adulthood. And I, I can now count myself in that other half. But for the half that start in childhood, they start really, really young.
Right. And we’re seeing it generally in the first two years of life. I mean, I just spoke to a mother over the weekend whose four month old had a reaction and that is really young. And so something is happening. We know that the gut microbiome is most malleable in the first few years of life, kind of like a foreign language, right?
You can learn a foreign language at any point in your life, but your brain absorbs the language better when you’re younger. And so when you get to ten, it’s a little bit harder. When you get to be 50, it’s harder. You can always do it. And so the gut I think similarly it’s like whatever we can learn about the young years, the early years and intervene and learn and kind of keep pushing along.
I think that’s really important. And the repurposing program I’m really excited about, because it is, you know, a much faster, more efficient and cheaper and safe way to get to new treatment options because a lot of the drugs are already sitting at your local pharmacy shelf. And so if we can start to research those drugs that are generic and widely available and inexpensive that have really strong potential for food allergy, we’re incredibly excited about that as well.
Dave: And now we have AI to help with that with that effort.
Ilana: So absolutely. Yeah. And we’re working on a few different AI related projects. I mentioned the food challenge predictive model, but we’re working with, some other AI partners on drug discovery as well, both in terms of analyzing drugs that already exist and how they might work for food allergy and drugs that don’t exist at all, but really using AI, technology to discover new drugs.
And that’s really exciting. And I think the next frontier as well.
Dave: Very, very exciting. What haven’t we covered? Is there anything else you would like our readers to, to know about you? What the Food Allergy Fund does?
Ilana: The more people we have involved in the organization, the more impact we can have.
Right. And that’s not just financial support, but it’s which is obviously truly appreciated, but really helping people understand the importance of scientific research in advancing change for our children. You know, education is really important and advocacy is really important. But the only thing that is actually going to solve this is science. And so for us, it’s how can we increase interest in scientific research and food allergy more generally.
Right. Whether it’s at the government level, at the pharma community, etc.. But we need ambassadors for food allergy research, to take priority. You know, there’s no reason that we can’t have more options. It really is not necessarily a science problem, It is an investment problem. And so if we can get all these different stakeholders, you know, private industry, government, to take a stronger interest in investment in food allergy, in addition to families who can help us philanthropically advance change, science will will get us to where we need to be.
So I’m really hopeful about the work that we’re currently doing, how we’re growing and, you know, the impact of these new technologies like AI and CRISPR to help make science even more effective.
Dave: And I just want to throw in that a lot of research is being thrown into question now because of funding through the NIH, through other governmental organizations.
Which makes the Food Allergy Fund even more important as a source of funding for these various research initiatives going on right now.
Ilana: Yeah. I mean, as you know, as you said there, right now, there’s a funding freeze in place. You know, at least for the next several months as well, because the way the NIH funding cycle works, it typically takes about six months from the time an idea is submitted to being scored, approved and funded.
And so there is now a significant delay in the funding that is happening. And from our perspective, you know, we’ve we’ve never been so busy, right. Because we’re really minding the gap to not only fund our existing researchers, but to help start and jumpstart new research that currently can’t start, with federal funding. And so, you know, our hope is that funding will resume sooner rather than later, and it certainly will.
But also when it does resume, you know, food allergy funding has been so low on a per capita basis that it’ll be interesting and hopeful to see, kind of with a focus on chronic disease, you know, hopefully food allergy comes to the top of the agenda, because if you look at it per capita, you know, TMJ, like if you grind, your jaw gets more money on a per capita basis than food allergy. Underage drinking gets more funding. Well, it’s simple don’t drink if you’re under age. Right. And so really I think it’s an opportunity hopefully for a reset in terms of food allergy funding starting to get the kind of the proportion in attention that it deserves. It’s at least 10% of the population. And even the population studies are now outdated as well.
And so if we look just kind of anecdotally what’s happening, everyone I talk to has food allergy in their family, which was not true five years ago. Right. And either people are talking about it more or it’s actually happening more. We don’t know. These are all things that we need to, you know, study and figure out. But certainly the numbers are not coming down.
And so, for us, it’s playing that critical role of continuing to fund, and like I said, you know, our phones are ringing off the hook. People are banging down our doors because we’re really sustaining food allergy research at the moment.
Dave: And what you’re saying, you know, 20-some-odd years ago, my daughter was first diagnosed, and she was an oddity.
There was one other little boy in her grade that had a food allergy as well, when she was in kindergarten, and that was it. Nowadays, it’s two in every classroom on average. The explosion is frightening.
Ilana: Yeah. And it’s not just the kids. I mean, I’m obviously in it for my daughter, but the adult explosion as well is, is so real.
And it’s happening more and more. And adults are completely blindsided because I think there’s at least more attention on… OK, I have to pay attention to my kid, but I personally was totally like, I had no reason to think I had food allergies. And I went from having zero to multiple in a span of two years with no obvious reason that I can point to.
Dave: Throw Alpha Gal in the mix now where you can walk outside, get a tick bite. Maybe develop a food allergy. It’s frightening.
Ilana, thank you so much. Appreciate it. Come back any time, we’d love to talk more. As I said, I’m very excited about the summit. We’ll be posting information about that in the blog post that has this interview, and much appreciated.
Ilana: Thanks so much. Thank you so much for having me. Can’t wait to see you in April and hope that all of you out there will join us as well. Thank you.
