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Sung Poblete (CEO of FARE) · Get Real with Jim Weiss

0:09
Speaker 1: I'm Jim Weiss, chairman and founder of Real Chemistry, and
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Speaker 1: this is the Get Real with the Chairman podcast. So
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Speaker 1: today's guest is the amazing song Pobletti. Throughout her career,
0:24
Speaker 1: her mission has been to galvanize change in the treatment
0:27
Speaker 1: and prevention of some of the world's most difficult to
0:31
Speaker 1: treat or calcitrin diseases. She herself suffers from food allergies
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Speaker 1: and as a result, has become the CEO of FAIR,
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Speaker 1: which stands for Food Allergy Research and Education, and she
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Speaker 1: continues this calling of hers here at FAIR. It's a
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Speaker 1: nonprofit funding research to advance treatment and raise awareness around
0:51
Speaker 1: food allergies as a serious public health issue. And I
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Speaker 1: think from this episode you're really going to hear why
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Speaker 1: it is a Tier one life or death crisis that
1:02
Speaker 1: affects upwards if you can believe it, thirty million Americans.
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Speaker 1: They provide evidence based education and propel advocacy at all
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Speaker 1: levels of government. Previously, Sung was the CEO Stand Up
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Speaker 1: to Cancer, where we were friends and supporters and partners,
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Speaker 1: and that's where she revolutionized cancer funding and supported the
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Speaker 1: development as some of the most promising breakthroughs and treatments
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Speaker 1: in that disease. Song holds a bachelor's Masters of Science
1:32
Speaker 1: and a PhD in nursing from Rutgers University, so she's
1:35
Speaker 1: really smart, take it from me. And she continues her
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Speaker 1: involvement at her alma mater as a visiting associate professor,
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Speaker 1: so she's paying it forward. In twenty sixteen, she was
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Speaker 1: inducted into the Rutgers All of Distinguished Alumni. Song also
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Speaker 1: serves as a member of the board of directors of
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Speaker 1: Epriciti Health, U Bivack and Proteus Ocean Group. Her role
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Speaker 1: at Fair covers many bases. In this episode, I want
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Speaker 1: to learn about the stigma surrounding food allergies and you
2:04
Speaker 1: certainly will too. Fair states that food allergies, like I said,
2:08
Speaker 1: are first tier health issues, and in this episode you're
2:13
Speaker 1: going to learn all about why Sung is inspiring. She's
2:17
Speaker 1: a change maker and she's an expert at getting real.
2:20
Speaker 1: So let's dive into our conversation. So, Song, thanks so
2:27
Speaker 1: much for getting back together with me, But I like
2:29
Speaker 1: to start at the beginning a little bit, if you
2:32
Speaker 1: don't mind talking about your background and all the really
2:37
Speaker 1: diverse things you've done and how you made a transition
2:41
Speaker 1: from nursing and that side of the world into the
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Speaker 1: business sector of healthcare sort of. How have those degrees
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Speaker 1: informed both your direction and your execution.
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Speaker 2: First of all, Jim, thank you so much for having
2:55
Speaker 2: me in terms of my education in my background. You
3:00
Speaker 2: have to understand nursing is not just about the clinical
3:03
Speaker 2: aspects of it. There's multiple roles. You can be an administrator,
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Speaker 2: you can be a researcher, scientist, you can be a teacher,
3:11
Speaker 2: you can be an educator. So for me, I didn't
3:15
Speaker 2: want to be bored and I wanted to do all
3:17
Speaker 2: of the above, and so I started my career very
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Speaker 2: early on in public health nursing as a parent child nurse,
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Speaker 2: being a school nurse, and being a STI investigator, and
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Speaker 2: also serving on the faculty junior faculty at Rutgers University,
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Speaker 2: the College of Nursing. So think about the fact that
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Speaker 2: my first job at Rutgers is still a part of me.
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Speaker 2: This is over thirty years running and I'm still there
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Speaker 2: as a visiting associate professor.
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Speaker 1: Now, it's great, and you did a lot of grant work,
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Speaker 1: I assume there and elsewhere. How has that grant work
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Speaker 1: to help you fundraise at a major nonprofit as you have,
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Speaker 1: what are the things you learned from that that have
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Speaker 1: led to I mean listening to and I always talk
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Speaker 1: about it's always about the people. It's always about your network.
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Speaker 1: It's always about networking. And I think some people think
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Speaker 1: it's about the paper and the paper pushing, but it's
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Speaker 1: probably a combination of those things. Is that true?
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Speaker 2: It is definitely true. And you know, I tell my
4:25
Speaker 2: students it's not always what you know, it's who you know,
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Speaker 2: the amount of knowledge that you may have. If you
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Speaker 2: don't get to showcase that and convince others, then what
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Speaker 2: is it for? What was late laws this con who
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Speaker 2: used to say this culture eats strategy for lunch. So
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Speaker 2: people have a lot to do with it. But for me,
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Speaker 2: the grant writing skill sets, it's really about strategy, right,
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Speaker 2: how do you develop an initiative and how did you
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Speaker 2: measure the impact? How are you going to measure it
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Speaker 2: so that you know that you have the most chance
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Speaker 2: of success. If you look at our donor pool out there,
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Speaker 2: whether it's an individual, corporations or philanthropists, they want to
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Speaker 2: know where their money is going. Having that eye of
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Speaker 2: impact and strategy really helps to aggregate funds for the
5:19
Speaker 2: important work that nonprofits too.
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Speaker 1: Was there any particular program you got funded back in
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Speaker 1: your earlier days that you're particularly proud of that might
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Speaker 1: still be going on or we should know about.
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Speaker 2: There are so many, but I think the one that
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Speaker 2: I was really proud of is with the National Science Foundation.
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Speaker 2: I'm not a physicist, I'm not a mathematician, and I'm
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Speaker 2: certainly not an engineer, but we developed a convergence program
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Speaker 2: with doctor Arnie Levine from the Institute for Advanced Study,
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Speaker 2: and this convergence program was bringing disparate disciplines together to
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Speaker 2: really break open answer research we know it. So here's
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Speaker 2: where we brought in machine learning experts, Here's where we
6:05
Speaker 2: brought in the engineers, the mathematicians, and we really merged
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Speaker 2: them with biologists and clinicians. And you know, the first
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Speaker 2: meeting that we had, it was the oddest meeting. You've
6:19
Speaker 2: got physicists and mathematicians interrupting the clinicians as they were presenting,
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Speaker 2: and the clinicians like, what is going on? Because you know,
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Speaker 2: clinicians were usually polite. We wait until after the talk
6:31
Speaker 2: and then raise our head, no rapid fire questions. And
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Speaker 2: it took I think an act of God three snowstorms
6:40
Speaker 2: in a row that kept us from leaving the invand study.
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Speaker 2: And it's how this group of researchers who were just
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Speaker 2: so very different bonded on a common opportunity to solve cancers,
6:56
Speaker 2: on those difficult problems. And from the grant we have
7:02
Speaker 2: this incredible researcher from Memorial, Sloan Kettering, who's working on
7:08
Speaker 2: a pain created cancer vaccine.
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Speaker 1: So before you joined Fair, you were the CEO Stand
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Speaker 1: Up to Cancer. You mentioned Laurasi Istan. Well, obviously you
7:16
Speaker 1: were there for more of a thin a decade and
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Speaker 1: you help drive the funding and development of new cancer treatments,
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Speaker 1: raised hundreds of millions of dollars. What were some of
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Speaker 1: the most memorable moments in that role, I mean, speaking
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Speaker 1: of impact.
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Speaker 2: There were so many. I remember once a very famous scientist.
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Speaker 2: I will spare his name for I do not want
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Speaker 2: him to be embarrassed. He was in the washroom washing
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Speaker 2: his hands and Jamie Fox said, oh, who are you?
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Speaker 2: Are you a scientist? And he said yeah, He's like,
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Speaker 2: I'm Jamie Fox, the host of the evening. And you know,
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Speaker 2: the scientist came out and said, I had no idea
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Speaker 2: who he was. I'm like, I'm sure he had no
7:53
Speaker 2: idea who you were. So I think the whole notion
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Speaker 2: of leveraging celebrities and influencers to really increase awareness, I
8:07
Speaker 2: think that was such a unique model that we forged
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Speaker 2: at Stand Up to Cancer and that allowed us to
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Speaker 2: raise over eight hundred million dollars.
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Speaker 1: I felt also you destigmatized it through that. Did you
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Speaker 1: feel that was another thing that happened. I really did
8:23
Speaker 1: feel that's what the organization made answer almost accessible. I
8:27
Speaker 1: know that sounds a little strange, but you know in
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Speaker 1: a way that we never really wanted to talk about it, and.
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Speaker 2: It's utilizing the bully pulpit for good leveraging and amplifying
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Speaker 2: the messaging. You know, there was a say, we all
8:40
Speaker 2: know someone who's been diagnosed with cancer, and the statistics
8:43
Speaker 2: are overwhelming. One out of three women, you know, a
8:47
Speaker 2: two out of three men will be diagnosed with cancer
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Speaker 2: in their lifetime. That is not acceptable.
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Speaker 1: So, I mean, you coached a Super Bowl team there
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Speaker 1: raised undreds of million dollars. As you said, what are
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Speaker 1: the key learnings from that that you're going to now
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Speaker 1: apply to fair to really bring that organization. I imagine
9:06
Speaker 1: the goals here and I will. We'll talk vision in
9:08
Speaker 1: a minute. But what do you think you've learned there
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Speaker 1: that you're going to bring here so much?
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Speaker 2: And what I've learned at Stand Up to Cancer is
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Speaker 2: to surround yourself with the best people, surround yourself with
9:21
Speaker 2: smarter people and leverage the heck out of them and
9:25
Speaker 2: together to collaborate, to cooperate and communicating and bringing a
9:31
Speaker 2: level of enthusiasm. And I'm going to use this word
9:34
Speaker 2: very loosely, but grit. You need that perseverance and the
9:39
Speaker 2: ability to be resilient to make sure that your vision
9:45
Speaker 2: is something that's going to be very tangible, not for
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Speaker 2: the organization itself, but the community that you're serving. And
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Speaker 2: it's why I'm so excited to be a fair. There
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Speaker 2: is the largest food allergy dedicated organization United States. But
10:01
Speaker 2: we're eleven years old and we're growing, and I think
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Speaker 2: Aristotle's best represents Fair today. Bowl is greater than the
10:13
Speaker 2: sum of its part because there is not just an
10:16
Speaker 2: organization made up of employees and an office in MCCLA
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Speaker 2: in Virginia. We have over fifty volunteer leaders and the
10:25
Speaker 2: board of Directors, board of Governors, board of Ambassadors, the
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Speaker 2: Rising Leaders Committee, and then look at our Scientific Advisory Council.
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Speaker 2: We have thirteen of the world's best, not only in
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Speaker 2: food allergy. So here's the learning. It's a convergent approach.
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Speaker 2: We have Regina Barzolay, who is the head of MIT
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Speaker 2: Engineering and Computer Sciences, and I took some of our
10:52
Speaker 2: favorite scientists from Stand Up with Me, Phil Sharp, doctor Sharp,
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Speaker 2: Nobel laureate, eievable human, even an unbelievable mentor who will
11:05
Speaker 2: do everything in anything to help his mentee succeed. He
11:09
Speaker 2: is now a special advisor to affair doctor Jim Allison,
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Speaker 2: who won the Nobel Prize for Cancer imnology, and so
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Speaker 2: many others in the food allergy space. But can that
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Speaker 2: convergent approach accelerate the pace of food allergies the way
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Speaker 2: it did for cancer research?
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Speaker 1: Why is this, like cancer, a matter of life and death.
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Speaker 1: Can you explain that fass so life threatening?
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Speaker 2: Food allergies is not a diet. It is a disease,
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Speaker 2: and it's a serious disease. There is one thing that
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Speaker 2: you can do to alleviate food allergies, and that is
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Speaker 2: to prevent it by abstating from coming into contact with
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Speaker 2: that food protein. There's one medication that can save your life,
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Speaker 2: and that's an epinephrient drug. So imagine, Jim, I'm someone
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Speaker 2: who has life threatening food allergies, and I have a
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Speaker 2: third food allergy that is very new to me. In
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Speaker 2: the last six months. We still for what it is.
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Speaker 2: But I've had eight ataphylactic reactions in the last six months.
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Speaker 2: So imagine my life carrying EpiPens and always wondering the
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Speaker 2: next piece of food I put in my mouth is
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Speaker 2: this going to create another anaphylactic reaction.
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Speaker 1: Which obviously can be and is life threatening. Tell me
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Speaker 1: how many people does this affect? I mean, is it
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Speaker 1: one in one hundred and one in a thousand? What
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Speaker 1: are we talking about in terms of prevalence?
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Speaker 2: So the statistics are staggering. We're looking at more than
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Speaker 2: thirty three million Americans with life threatening food allergies, and
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Speaker 2: if you include those that have food intolerances living with
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Speaker 2: you the day to day symptoms, that's eighty.
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Speaker 1: Five million lack the difference.
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Speaker 2: Well, it's not life threatening, but it causes you to
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Speaker 2: avoid the food. But because it can give you nausea,
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Speaker 2: it can give you upset stomach, it could make you
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Speaker 2: feel very, very uncomfortable. And if you want to break
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Speaker 2: that down into simple statistics, you can say that one
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Speaker 2: in ten adults have life threatening food allergies, one in
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Speaker 2: thirteen children will also have life threatening food allergies.
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Speaker 1: And is the reason you've left? You know you came
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Speaker 1: to this. Is it more a personal mission? Why this
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Speaker 1: organization that you're looking now to transform and change? What's
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Speaker 1: the personal quest here?
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Speaker 2: I think you said it. It is very personal for
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Speaker 2: me to be head of FAIR. If you look at
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Speaker 2: the science of food allergies, there hasn't been a lot
13:52
Speaker 2: of investment that has been made. We're always trying to
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Speaker 2: push and see I to give more budget is what
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Speaker 2: six billion dollars? Guess what food allergy budget is at
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Speaker 2: the NIH fifty million dollars.
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Speaker 1: Right.
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Speaker 2: We gave fifty million a year at stand Up and
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Speaker 2: we were one of I was in organizations, in the nonprofits.
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Speaker 2: You know, the funding is very very light in terms
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Speaker 2: of food allergies. And when you don't have a lot
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Speaker 2: of discovery research, a lot of translational research, it's really
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Speaker 2: hard to obviously have new treatments or even a cure.
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Speaker 2: And so for me, I'm excited about the fact that
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Speaker 2: I can bring in a group of scientists with scientists
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Speaker 2: that are already working in food allergies and provide funding
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Speaker 2: so that we can elevate the science and figure out
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Speaker 2: a cost, a mechanism, a cure that can really benefit
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Speaker 2: all of us.
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Speaker 1: So let's talk a little bit about the science and
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Speaker 1: the genetics. How do you get here? I mean, is
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Speaker 1: are you born with this? Is it something that gets
15:02
Speaker 1: developed once you're because I remember my daughter seemed to
15:05
Speaker 1: develop allergies later. What is the typical sort of patient
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Speaker 1: journey in this case? And I don't know if patient's
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Speaker 1: the right word. Probably isn't it is?
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Speaker 2: It is because it is a disease, not a diet,
15:19
Speaker 2: but the usual course. And this is what the clinicians
15:23
Speaker 2: will call it. They call it an atopic march. When
15:27
Speaker 2: you're born, the infinct is very irritable, crying a lot,
15:32
Speaker 2: and what you see is a topic dermatitis and they're scratching,
15:37
Speaker 2: they're itching. Then the child will have asthma and then
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Speaker 2: they develop food allergies. For me, I was at typical
15:47
Speaker 2: atopic march, but I developed food allergies later as an
15:51
Speaker 2: young adult.
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Speaker 1: And did you have any warning that was it in
15:54
Speaker 1: your family? Is it familial and you or did it.
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Speaker 1: You were just totally caught off than surprised.
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Speaker 2: Totally caught off guard in surprise. One day you're eating
16:04
Speaker 2: something that you've eaten all your life, and the next
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Speaker 2: day it sends you to the emergency hero.
16:17
Speaker 1: Now I want to shift into a section I'm calling
16:19
Speaker 1: so What's it all mean? Where we hear about your
16:22
Speaker 1: work and action and how it's playing out in the
16:24
Speaker 1: real world. So they really have it, like you said,
16:33
Speaker 1: have not other than the work we did, as I
16:35
Speaker 1: told you with Amune, we really have not had an
16:38
Speaker 1: advance in the sector at all, right, I mean other
16:42
Speaker 1: than the EpiPen which you've got to go through one
16:45
Speaker 1: of these or two of these before you even though
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Speaker 1: you need it.
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Speaker 2: So Amune's drug Healthworzia was the first ever f to
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Speaker 2: approof a drug for life threatening food allergies. But it
16:58
Speaker 2: only covers peanut. You know, there are a lot of
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Speaker 2: other foods that individuals have allergic reactions to. What's more
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Speaker 2: encouraging is on the epineff in front. There are other
17:12
Speaker 2: ways in which you can give epine f R. Now,
17:15
Speaker 2: so there is a nasal spray that's under FDA approval.
17:20
Speaker 2: There are some lingual applications. So I'm really hopeful that
17:25
Speaker 2: there will be innovation in the food allergy space. We
17:29
Speaker 2: need more bullish people to come in and say, you
17:33
Speaker 2: know what, I'm excited about the space and I can
17:36
Speaker 2: help thirty three million Americans. But remember, this is a
17:40
Speaker 2: disease of the immune system. Your immune system has gone
17:43
Speaker 2: on hyperdrives and your immune system is identifying certain food
17:49
Speaker 2: proteins and thinking it's a foreign invader and it's attacking it.
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Speaker 1: What did you face when you told people like I
17:57
Speaker 1: have a sickness on what do patients face and they
18:00
Speaker 1: are dealing with this reality with others?
18:03
Speaker 2: Thank goodness, I had this diagnosis of a young adult.
18:06
Speaker 2: I already knew how to advocate for myself, being a
18:09
Speaker 2: nurse and probably not being shy. But one of the
18:13
Speaker 2: biggest challenges people think, oh, she's a picky eater. Oh
18:17
Speaker 2: she probably doesn't want to gain way, and that's why
18:20
Speaker 2: she's being discriminated against certain foods. So it's that judgment.
18:26
Speaker 2: I think that was really difficult. But for eighty child
18:31
Speaker 2: who's in elementary school, the bullying and it is severe.
18:36
Speaker 2: You live with that anxiety. A couple months ago, there
18:39
Speaker 2: was a newspaper article about a high school student who
18:44
Speaker 2: played football in Texas. He has a life threatening peanut allergy,
18:50
Speaker 2: and two of his football mates decided to put peanut
18:54
Speaker 2: butter powder in his locker and all inside his uniform,
19:00
Speaker 2: and this young man broke down into how dives from
19:04
Speaker 2: head to tilt and had anaphylactic reaction.
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Speaker 1: I mean, wow, yeah, I mean kids don't know, right,
19:12
Speaker 1: They just don't understand it.
19:13
Speaker 2: And I think that people are often afraid of things
19:17
Speaker 2: that they don't understand, and many kids don't understand that
19:22
Speaker 2: food allergy is not a choice. It's a disease and
19:26
Speaker 2: it's severe. It can be extremely severe. So I think
19:30
Speaker 2: we need to socialize and bring the awareness of life
19:35
Speaker 2: threatening food allergies to the forefront, and we have to
19:38
Speaker 2: make it a first tier issue in this country.
19:41
Speaker 1: Where's the block when when you talk to government officials
19:44
Speaker 1: know where are they not getting it right?
19:47
Speaker 2: And I think you know, the way the government agencies
19:51
Speaker 2: calculate funding is by morbiditting mortality. I feel like it's
19:56
Speaker 2: terrible for me to say this. I feel like we
19:58
Speaker 2: would get more money if the food allergic community didn't
20:02
Speaker 2: take care of themselves and there were more deaths. But
20:06
Speaker 2: that's where the reality is. But the food allergy community,
20:11
Speaker 2: we are so good at advocating for ourselves and even kids,
20:15
Speaker 2: making certain that we are safe. And you've said it.
20:20
Speaker 2: Food is universal, and food is what brings us so
20:24
Speaker 2: much joy. It's what brings us other what everyone with,
20:29
Speaker 2: even life threatened food allergies, to find that joy. For me,
20:34
Speaker 2: having all these allergic reactions the last six months, I've
20:38
Speaker 2: hunkered down and I have thrown more dinner parties at
20:41
Speaker 2: home by extending my dining room table, and I know
20:46
Speaker 2: exactly the ingredients that are putting in all of the dinners,
20:49
Speaker 2: and quite frankly, I've been having a great time and
20:53
Speaker 2: I hope my friends have been too good.
20:56
Speaker 1: Well, that's great. So tell me some of the programs
20:59
Speaker 1: that Fair has launched, initiatives that we should know about,
21:03
Speaker 1: reasons to fund the good work, and the kind of
21:06
Speaker 1: impact you're having. I assume you got involved with that
21:09
Speaker 1: Texas situation in some capacities.
21:12
Speaker 2: Let me address that first, because it's very near and
21:15
Speaker 2: dear anyone who gets bullied like that where the school
21:18
Speaker 2: officials are Okay, we're going to set these kids out
21:22
Speaker 2: of two games. That does not fit the crime. The
21:25
Speaker 2: parents did read a very strong letter that they're put
21:30
Speaker 2: out at the board meeting. I don't think they made
21:34
Speaker 2: the right decision. I would love to see these kids
21:38
Speaker 2: volunteered for FAIR and t DA Have a Life, Be
21:42
Speaker 2: a Peal program and really understand what they did and
21:46
Speaker 2: why it was so traumatic.
21:49
Speaker 1: I mean, it's an attempted murder. I don't know how
21:53
Speaker 1: you could look at it any other way. As am
21:54
Speaker 1: I being crazy though, I mean, I'm sure that wasn't
21:57
Speaker 1: their intent, but come on.
22:00
Speaker 2: And I think if they understood the seriousness of what
22:03
Speaker 2: they did, might have started out as a prank, but
22:06
Speaker 2: jeopardizing someone's life your teammate doesn't make you us scanned
22:11
Speaker 2: up individual. And I think they need to repent. And
22:14
Speaker 2: I'm happy for these two kids to call us at
22:16
Speaker 2: there and volunteer. Let them go on the road all
22:20
Speaker 2: across Texas teaching. You know, our two programs. Be a
22:24
Speaker 2: Pal meaning put yourself the shoes of a food allergic kid,
22:28
Speaker 2: see what that's like. That's what these kids need to do.
22:31
Speaker 2: And then you know, save a life. Do you know
22:35
Speaker 2: how to administer and have an effort pen? Do you
22:38
Speaker 2: know how to even know the symptoms of someone going
22:41
Speaker 2: to anaphylaxis. It's a great program, it's a great initiative,
22:46
Speaker 2: and I'm really proud that anyone that has been diagnosed
22:51
Speaker 2: with food allergies, they turned to our website, they turn
22:55
Speaker 2: to our educational materials that have been invented by ambissions
23:01
Speaker 2: to utilize in their food allergy journey and our advocacy group.
23:06
Speaker 2: You know, there are capital help pounding the pavement and
23:10
Speaker 2: making certain that we have wins for our community. One
23:15
Speaker 2: of the acts that we were really excited about was
23:18
Speaker 2: called the Faster Act where we labeled sesame as a
23:23
Speaker 2: ninth allergen and what it helped us to do was
23:28
Speaker 2: for labeling for manufacturers to label sesame. This kind of
23:35
Speaker 2: backfired on us because the bakers are wonderful bakers in
23:41
Speaker 2: this country, some of them decided to circumvent the law
23:46
Speaker 2: and intentionally add sesame. So community members who were eating
23:52
Speaker 2: at chain restaurants where they've never had an issue, all
23:56
Speaker 2: of a sudden going to addaphull axis because there were
23:59
Speaker 2: lerge to set me and there was intentional addition of sesame.
24:04
Speaker 2: And our representatives that we've worked with, they were really
24:09
Speaker 2: really upset about the circumduentity of the law and they
24:14
Speaker 2: did the right thing. The Bakers did not.
24:16
Speaker 1: But the Bakers didn't that mostly for economic reasons. Do
24:20
Speaker 1: you think, are you know what is the what is
24:22
Speaker 1: the driver here and what are the barriers.
24:25
Speaker 2: One of the things that we're really excited about today
24:28
Speaker 2: because we have so many accomplishments. Here's one that I'm
24:32
Speaker 2: really excited about. We have our youngest representative, Representative Frost
24:39
Speaker 2: of Florida, who had put together or introduced a new
24:44
Speaker 2: federal bill that would cap the cost of epinephrine at
24:49
Speaker 2: sixty dollars. I think if we can get this stun,
24:53
Speaker 2: that would be one of the biggest wins we have.
24:56
Speaker 2: At their epinephrine injectors expire in one year. Some of
25:02
Speaker 2: the families pay anywhere from six hundred to seven hundred
25:07
Speaker 2: dollars for this. And think about it, if you have
25:10
Speaker 2: a child, you don't need one, you need two because
25:13
Speaker 2: you have to leave one at school. So you're talking
25:16
Speaker 2: about maybe fourteen hundred dollars a year cost of epidifferent injectors.
25:23
Speaker 2: And if you think about the fact that forty four
25:26
Speaker 2: million Americans are living in a household where they don't
25:31
Speaker 2: have enough food to eat, how many of those kids
25:36
Speaker 2: or individuals will have fourteen hundred dollars a year to
25:40
Speaker 2: buy epidefferent injectors.
25:42
Speaker 1: Into those same kids who are below poverty line. How
25:46
Speaker 1: are they I mean their food probably is is are
25:49
Speaker 1: we ensuring that they're not going to get these allergies
25:52
Speaker 1: from the food they eat? How do we? I guess
25:55
Speaker 1: you have initiatives there as well?
25:56
Speaker 2: Right, we do, and we call it the Fair Neighborhood,
26:00
Speaker 2: and we're super excited about this. We are literally bringing
26:04
Speaker 2: in our FCN or Fair Clinical Network Centers, a lot
26:09
Speaker 2: of nonprofit organizations in the spades, food banks, primadoes, you
26:15
Speaker 2: name it, all working together. While they're educating and being
26:21
Speaker 2: part of that community, we're also talking about food allergies.
26:25
Speaker 2: One of the things that I want to say, Jim,
26:27
Speaker 2: is that we don't want to scare people. There has
26:30
Speaker 2: been so much history of fear related to anaphylective food allergies.
26:37
Speaker 2: I want to take the fear out of it and
26:40
Speaker 2: make certain individuals and their families are fair informed and educated.
26:46
Speaker 2: This is a condition that we can live with, and
26:50
Speaker 2: fair can help patients be part of that journey. While
26:54
Speaker 2: we raise significant funds for new treatment opportunities and a cure.
26:58
Speaker 1: I guess I wanted to get one question that I
27:01
Speaker 1: forgot to ask. There's this cross contact occurring the food.
27:05
Speaker 1: So going back to some of the FDA things that
27:08
Speaker 1: I pointed out, especially with processed foods and manufacturing, is
27:12
Speaker 1: it getting worse? It seems like allergies are more prevalent
27:16
Speaker 1: as each generation goes. What's the reason for that.
27:20
Speaker 2: Let me tackle the cross contact and cross contamination. It's
27:25
Speaker 2: not getting worse. But then we have some bad actors
27:28
Speaker 2: with a faster act so let me call them out again.
27:31
Speaker 2: Intentionally adding sesame not a good thing to do. And
27:36
Speaker 2: I want you to know our advocates, grassroots Advocates ninety
27:40
Speaker 2: eight thousand of them strong or watching.
27:43
Speaker 1: It because I know with my daughter and others, and
27:45
Speaker 1: that was something when we spoke to folks about that.
27:49
Speaker 1: With our own situation. Obviously, the food supply is genetically modified.
27:55
Speaker 1: I mean, we are the advocates looking to change some
27:58
Speaker 1: of that as well.
28:00
Speaker 2: I think that you know there are several theories why
28:03
Speaker 2: food allergies is so prevalent today than it was twenty
28:08
Speaker 2: thirty years ago, and the growth is exponential when it
28:13
Speaker 2: comes to the prevalence, but most agree that it's really
28:18
Speaker 2: the germ theory because we're always utilizing anaseptic rubs and
28:24
Speaker 2: keeping everything super super clean, that we're not giving kids
28:29
Speaker 2: a chance exactly.
28:31
Speaker 1: Well, I hear you. It just seems to be something
28:34
Speaker 1: we're hearing more and more about and has more urgency.
28:37
Speaker 2: It certainly does. And I'm also very proud of two
28:41
Speaker 2: things in the research. For how, we have a prevention
28:45
Speaker 2: study where we're looking to prevent food allergies in infants,
28:50
Speaker 2: and we should be very very close maybe next year
28:54
Speaker 2: with results, but we already know from several studies that
28:59
Speaker 2: if you introduce foods early peanut and milk, you will
29:06
Speaker 2: have the ability to decrease at aphylactic food allergies, so
29:11
Speaker 2: that we should will be working towards. The other thing
29:16
Speaker 2: that I'm really proud of is this short documentary that
29:21
Speaker 2: we created at Bear with a shoestring budget of eight
29:25
Speaker 2: hundred dollars. It's called It's a Disease, Not a Diet,
29:29
Speaker 2: and I think it gives you an insight to how
29:33
Speaker 2: the mind of a food allergic individual works normal day
29:38
Speaker 2: to day activities, whether you're going to a restaurant to
29:41
Speaker 2: meet a friend for a lunch or you're dropping your
29:45
Speaker 2: child off to school. What are all the thought processes
29:48
Speaker 2: that are going through your mind? What if you have
29:50
Speaker 2: to send your child to a plane date? Are you
29:53
Speaker 2: going to be that difficult parent who calls and says
29:56
Speaker 2: who's coming? What's being served?
29:59
Speaker 1: You know?
29:59
Speaker 2: Do you peanuts in the house? Do you have this
30:01
Speaker 2: in the house?
30:02
Speaker 1: So I imagine a lot of what you did to
30:04
Speaker 1: destigmatize different types of cancers. That's the goal here, right,
30:08
Speaker 1: You're going to play that playbook out.
30:10
Speaker 2: I am really bullish about where we're headed, and I
30:14
Speaker 2: think twenty twenty four is going to be even brighter
30:17
Speaker 2: than twenty three.
30:18
Speaker 1: Our audience, as you know, is a lot of pharma
30:21
Speaker 1: and venture and private equity. What what do you want
30:26
Speaker 1: to say to them? What's the message when you go
30:29
Speaker 1: talk to partners? Are there enough corporate partners? Are there
30:32
Speaker 1: enough financial partners? How do we activate this community beyond
30:36
Speaker 1: what you're already doing.
30:37
Speaker 2: We want to create an environment of giving, and just
30:43
Speaker 2: like we did at Stand Up to Cancer, We're going
30:46
Speaker 2: to make giving super super cool and we want people
30:49
Speaker 2: to give because we need funds for discovery translational research
30:55
Speaker 2: so we can have treatment options and we can find
30:58
Speaker 2: a cure. While fare supports to the journey of a
31:02
Speaker 2: food allurgic family, we need every single one. Can you
31:06
Speaker 2: imagine your audience of millions. If they just donated a dollar,
31:11
Speaker 2: we would have a robust research program. What if they
31:15
Speaker 2: donated ten, Oh my gosh, we might be able to
31:18
Speaker 2: fund more than anih. Now you're talking. Now, you're getting
31:22
Speaker 2: me very excited.
31:23
Speaker 1: I absolutely want to spread that word. But I think
31:26
Speaker 1: for any of those listeners and people involved in the space,
31:31
Speaker 1: you should be the first to go to who else
31:34
Speaker 1: is out there? Who else? Are there other groups that
31:36
Speaker 1: are as involved in prominent.
31:39
Speaker 2: I No, we really are the largest in the category.
31:42
Speaker 2: It's very different from the cancer space. There's multiple organizations
31:47
Speaker 2: where like the American Heart or the American Diabetes Organization,
31:51
Speaker 2: where when it comes to disease specific we are it.
31:56
Speaker 2: It's just that we're eleven years old or we're hitting
31:59
Speaker 2: our teenage. But we're going to be feisty, we're going
32:02
Speaker 2: to be gritty, We're going to be resilient. And know
32:04
Speaker 2: this our community of thirty three million Americans, they influence
32:10
Speaker 2: everything in terms of purchase extremely So hopefully through this
32:16
Speaker 2: podcast we'll have some commercial co ventures and Jim, we
32:20
Speaker 2: need you to volunteer and give us a great idea.
32:23
Speaker 2: We need your creativity.
32:25
Speaker 1: I'm looking forward to getting some time with you, you know,
32:28
Speaker 1: somehow embodying and maybe even leveraging AI to help people
32:34
Speaker 1: understand and create empathy for this problem in a way
32:38
Speaker 1: that brings at home more. I think that there's an
32:40
Speaker 1: opportunity where can we catch the documentary.
32:43
Speaker 2: We're going to put it on our website next week.
32:46
Speaker 2: The other thing that I want to mention if there's
32:48
Speaker 2: anyone listening interested in doing commercial co ventures. We're in
32:53
Speaker 2: the airlines. Oh God, such a complex issue with food
32:57
Speaker 2: allergy community. Let us help you solve it. We want
33:02
Speaker 2: to fly. We just want to do that in a
33:05
Speaker 2: safe environment.
33:07
Speaker 1: And May marks two years for you as the CEO.
33:11
Speaker 1: What do you hope for the next two years? What
33:13
Speaker 1: is the vision? What is the goal?
33:16
Speaker 2: We are single minded. We are going to make food
33:20
Speaker 2: allergies a top tier issue in this country. We're going
33:23
Speaker 2: to raise significant funds so that we can find new
33:27
Speaker 2: treatments and even a cure. That's it. We're growing twenty
33:32
Speaker 2: five percent year over year until we end food allergies
33:36
Speaker 2: as we know it.
33:36
Speaker 1: I imagine that's your greatest dream for the food allergy
33:40
Speaker 1: community right to have that cure.
33:42
Speaker 2: We need it because avoidance is not a cure.
33:46
Speaker 1: No, you can live with it, but like you said,
33:48
Speaker 1: there's a lot of stigma and angst tied to it
33:51
Speaker 1: that I imagine causes other problems.
33:55
Speaker 2: Yes, but we're also going to do the other thing right,
33:59
Speaker 2: change fear into fair and forms, and we have the
34:03
Speaker 2: right team in place.
34:05
Speaker 1: To do it.
34:06
Speaker 2: One quote that noble word, Phil Sharp taught me, and
34:10
Speaker 2: it's a lesson that I will never forget as a fundraiser.
34:14
Speaker 2: When you hear the word no, it is traumatizing. It
34:18
Speaker 2: is so disappointing and it hurts you at the core.
34:23
Speaker 2: And it was the one that Phil asked me to
34:26
Speaker 2: reach out to that see if you could raise money
34:29
Speaker 2: for stand Up. Well, after three and a half months
34:31
Speaker 2: of trying, it didn't happen. And so I pick up
34:35
Speaker 2: the phone called doctor Sharp and say, doctor Sharp, I'm
34:38
Speaker 2: so sorry to disappoint you. I tried and I just
34:43
Speaker 2: couldn't get it done. There's a pause and then he says,
34:47
Speaker 2: so no is another opportunity for es, And that changed
34:53
Speaker 2: my entire perspective.
34:54
Speaker 1: I have the same problem that no it's not Okwardes.
35:00
Speaker 1: I think it's one of the most incredible points. No
35:03
Speaker 1: as a driver for some of us. Anyway, Thanks so much.
35:08
Speaker 1: I wish you. I'm a lot of luck here, but
35:10
Speaker 1: I know better to be lucky and smart and we'll
35:13
Speaker 1: work together.
35:14
Speaker 2: Thank you, mister Chairman, Thank you so much.
35:20
Speaker 1: Thanks to everyone listening to Get Real with the Chairman
35:23
Speaker 1: podcast is a production of Real Chemistry. Our executive producer
35:27
Speaker 1: and researcher is Kate Voss, and a special thanks as
35:31
Speaker 1: always to Danielle Clark Brown and our team at Real Chemistry.
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