Episode Transcript
[00:00:02] Speaker A: The Feeding Matters International Pediatric Feeding Disorder Conference explores the theme Feeding Development, where systems, skills and stories connect. This entirely virtual conference includes over 30 hours of continuing education with keynote sessions from Emory center for Ethics professor John Liesecker and from the family, nutritionist Alexandra Turnbull. Attend live vice virtually February 25th through the 27th, and view on demand March 9th through April 30th. Visit feeding matters.org conference to learn more.
[00:00:44] Speaker B: Presented by Feeding Matters with hosts Jacqueline Peterson and Dr. Haley Estrom.
Feeding does Matter.
Hey, everyone. Welcome to Feeding Does Matter. I am back with my co host, Dr. Haley Estrom. Hey, Haley. Hi, Jacqueline.
[00:01:08] Speaker C: How are you doing?
[00:01:09] Speaker B: I'm. I'm doing. I'm doing well, all. All things considered. So, yeah, doing well enough.
I love our podcast because we get to dive into different things. And this year, every Tuesday will be, you know, we'll have different guests on and stuff still like we did last year. But it'll be fun to do some walks down memory lane together as well. And so today with you, I thought we should do a walk down memory lane with you because you've been with us for a really long time too.
I think before we changed your name to Feeding Matters, you were with us during Popsicle years, is that right?
[00:01:48] Speaker C: I was, yes. I've been a part of things since about.
In a formal way, since about 2011.
[00:01:58] Speaker B: Wow.
[00:01:59] Speaker C: Yeah.
[00:02:00] Speaker B: Yeah. So, I mean, we were established in 2006.
So how did you find Popsicle Center? And do you remember what Popsicle stood for?
[00:02:10] Speaker C: I do, yes. So it was parent organized partnership supporting infants and children learning to eat.
[00:02:19] Speaker B: Yay, Popsicle.
[00:02:22] Speaker C: Yes. And I still have one of the little magnets that was the cute Popsicle logo on our refrigerator with the wings. Yes. Little Popsicle with wings. Love it.
And I love explaining it to people.
[00:02:38] Speaker B: That is the one thing that our name did really well was, you know, even though we had to change Graffiti Matters to become who we are today, I think part of Popsicle, it made you stop. And then you were like, okay, what is Popsicle? And it's like, oh, yeah. Infants and children do need to learn how to eat. And I think it's so great that we've also, like, kind of come full circle on that. This, this year with our beyond the growth chart and feeding development as its own domain work of really saying that, like, yes, we need to be monitoring how feeding development is looking and what this looks like because children do learn how to eat.
It doesn't just come easily.
[00:03:14] Speaker C: Yeah. And we first learned about Popsicle from one of my son's feeding therapists who was at UNC Healthcare.
[00:03:23] Speaker B: Really? That's how you found us? Oh, my gosh.
[00:03:27] Speaker C: Yeah.
[00:03:28] Speaker B: I don't think I knew that.
[00:03:29] Speaker C: Yeah.
[00:03:31] Speaker B: And so they were just like, you've got to see Popsicle.
[00:03:34] Speaker C: Yeah, look this up. Find it. Yeah. And so we. I looked online, and that's where I first heard about that conference that we went to in 2010.
That was at what, the Embassy Suites?
[00:03:48] Speaker B: Yeah, Suites in Biltmore.
[00:03:51] Speaker C: Yeah.
[00:03:52] Speaker B: So we had our first conference in. Yeah, we would have had one in 2010 and 2012 and then 2015.
And oftentimes at those conferences, our founder and our former CEO, so Shannon, our founder, and Chris Lynn, our former CEO, would bring together not only, you know, the speakers from our founding medical professional council member, who were individuals that they had called to sign up to this cause from across the country and in Australia for Dr. Jal's case, but then would have them be speakers at this event. And we were just. I think they just brought it together to be able to infuse the Phoenix area with some information on feeding.
So I'm sure that they were kind of surprised that you came from where you came from.
[00:04:50] Speaker C: Yeah, they.
They were a little bit surprised. But, I mean, you have to imagine that we were a group of nursing students in our PhD program working on developing measures to assess feeding problems. I mean, we weren't really calling it pediatric feeding disorder yet at that point.
[00:05:10] Speaker B: No one was. Yeah.
[00:05:11] Speaker C: So this was around 2009. It wasn't even really 2010 yet that we had heard about the conference coming up because they were, you know, always held really early in the year.
And I had heard about the conference, and I had heard about Popsicle from my son's feeding therapist. And so I was new in the PhD program, and I'm trying to get into everything, starting to absorb everything I could, and there really wasn't a whole lot out there. Right. Yeah. And so I'm looking for conferences. And I. I had just heard about this, and I looked it up and I was like, oh, great. And I have money for travel. Cause I'm in the PhD program. So I was like, well, we can go.
So we had just really started to form the Feeding Flock research team.
And so the. The three of us that were the PhD students on the team went out to this conference.
And I don't even think there was a hotel block, right?
[00:06:11] Speaker B: No, I.
I mean, there probably was. For the speakers, like the medical professional cast members at that time, we really didn't think that people were coming from anywhere.
I don't think we realized our reach yet.
[00:06:23] Speaker C: Well, you had reach. You were noticed. And so we, we show up at the conference and we're, you know, we went up to talk to people.
[00:06:31] Speaker B: We were so excited.
[00:06:33] Speaker C: And, and I remember, I think we, we talked to Chris Lynn and we, you know, we introduced ourselves and we said hi, you know, you should really maybe consider doing a hotel block. You know, open this up more widely. You know, we're very interested. And yes, we're, we're nurse scientists. You know, we think this is fantastic.
And I also remember, I remember when this was exactly. Because I was really quite pregnant and this was the last travel I could do with that pregnancy with my middle child because I was not only. You know, they always joked that I wasn't. I was dissertating and gestating. I was doing my PhD and making babies.
But yeah.
So
[00:07:21] Speaker B: wow, you've been with Feeding Matters even longer than I have.
[00:07:25] Speaker C: Oh, well, just a little bit.
[00:07:28] Speaker B: No. Yeah, for sure. Because I didn't come around until 2013.
Okay, so you guys came out to do the conference.
[00:07:35] Speaker C: Yeah.
[00:07:35] Speaker B: And then kind of got aware of like some of the conversations that were happening and some of the committees that were happening. And then did Chris and Shannon kind of pull you into the work? Because that's, that's kind of how.
[00:07:48] Speaker C: Yeah.
[00:07:48] Speaker B: So then probably still goes to this day.
[00:07:52] Speaker C: Stayed connected. Yeah. And then I ended up being part of the treatment and research or research and treatment committee.
And I think Aaron Ross was the chair of that.
[00:08:03] Speaker B: Yeah, that makes sense.
[00:08:04] Speaker C: Yeah. And I kind of helped them out and I think I, I took minutes.
Oh, I worked with them for a little bit. And then I remember I was at that next conference in early 2012
[00:08:22] Speaker B: that we did that when at a children's hospital. Is that right?
[00:08:27] Speaker C: I do not remember where it was located.
[00:08:30] Speaker B: See, these are just historical documents I'm trying to reference. I don't have any real world experience. I could tell you 2015's conference.
[00:08:38] Speaker C: When did the name change?
[00:08:40] Speaker B: The name changed in 2013.
[00:08:42] Speaker C: Okay, so that was the last one.
Oh, that's right. That's when I got the pen with popsicle engraved on it. Oh, that was very nice.
[00:08:51] Speaker B: Yeah.
[00:08:53] Speaker C: And I think Pamela Dodrell was there and that, I mean, that was a nice conference, that one. In 2012.
[00:09:01] Speaker B: Yeah.
[00:09:03] Speaker C: And yeah.
And then you came on the scene in the next year.
[00:09:07] Speaker B: I came on in the next year when we were changing our name and it was really cool to see what needed to happen to change the name and like Kind of why that, like, if we wanted to be this powerful force of an organization and we needed to.
It's not that popsicle wouldn't keep us serious, but I think Feeding Matters allowed us to be more sophisticated. And it was long. It was, it was long and hard to explain. Yeah. It was asked. Yeah. And to be like, yeah, feeding does matter, the name of our podcast. And so, yeah, I, I came on in that regard as the volunteer coordinator and the grant writer. And so I did grant writing for our programs and then did a lot of our volunteer stuff. And that led to also supporting our parents in our Power of Two program too, which kind of got me my first taste of what this really is like for families. But just because I wasn't, I mean, I was single, unmarried at that point, didn't have any children or anything. And so this was a completely foreign issue to me. I just knew that I had experience and education in nonprofits and healthcare innovation and systems change. And so I was like, oh, yeah, this seems like a good fit.
Had no idea that it was like a really great fit. And I would fully fall in love with our mission.
[00:10:37] Speaker C: But yeah, yeah, working with Power too would be an excellent introduction to.
[00:10:44] Speaker B: Yeah. Sink or swim learning kind of there.
Yeah. And so let's talk a little bit further about. Because you met us at the beginning of your PhD program, but then you did your dissertation. And I feel like our worlds have been so parallel with like your history with Feeding Matters and then your world in general and what you've done in your career and your profession and everything. So maybe share a little bit about even just outside of Feeding Matters, your dissertation work. Because I don't think we've talked about it too, too much on the pod.
[00:11:16] Speaker C: Well, in my dissertation, I, I ended up doing the three part dissertation where you turn it into three different papers.
And so for the first part, I was looking at like the evolution of how the literature or how publications have talked about feeding problems and feeding disorders.
And so just looking at over history and time, how it's been presented by professionals when they talk about it in their papers.
And really it turned out that they'd talked about it in terms of things like maternal deprivation, you know, and I can get really in depth with this, but it turns out that some people, like in the, was it in the 40s or something, they, they, they had children that were in orphanages or, or foundling homes, and really those, those babies just had a complete lack of attention or caregiving. It wasn't that they were technically lacking Mothers, but it's just that they hadn't been. They didn't have much attachment or parenting or care. Loving care at all. Like they weren't really being handled or held or carried around, but they were just sit cribs all the time.
And so unfortunately, they were equating lack of care with lack of thriving or lack of mothering with lack of thriving, which, which really wasn't accurate.
[00:13:08] Speaker B: And that's like a link in literature that can last when people misinterpret what that means. Because I know even when I first read it, I was like, that's where the blaming came from. Right.
[00:13:19] Speaker C: And. And there's a parallel with that between refrigerator mothers with autism. Yeah. So I mean, that's just another. It's just, it's not right. It's. And it's unfair and it's, it's unfair. We're. But mother blaming and the stigma and it's just, it's, it's just so unfair.
And then later on the, the non organic and organic failure to thrive again, there's more of that failure labeling.
And that is to say, I mean there are some very rare cases where there are some situations of abuse or neglect, but those are extremely rare cases. In most situations, parents are very well intentioned and trying everything they can to adequately nurture and nourish their children.
[00:14:19] Speaker B: Yep. And the world just kind of struggled with how they were defining this and what they were calling it.
[00:14:23] Speaker C: Exactly, exactly.
[00:14:24] Speaker B: And that's what led us down to.
[00:14:27] Speaker C: And so we, we have a lot of different other names. So there's dysphasia and there's feeding difficulty, there's mealtime behaviors, there's mismanagement. There's just dozens of other names and labels for this. And the main problem is, is that there's just been so many labels for it in the literature that we really need one.
One name. Just one name or one solid way to track this condition across the literature.
You know, and so coming now into the future, you know, in a present day, we have avoidant restrictive food intake with disorder. We have pediatric disorders.
[00:15:07] Speaker B: Yep.
[00:15:08] Speaker C: Yeah.
Yeah. So ARFID came online in 2013 and now we have PFD that came out in 2021.
[00:15:16] Speaker B: Yep.
[00:15:17] Speaker C: And so we have a couple better things to deal with. That's great paper. Two I from the parents.
[00:15:25] Speaker B: But you. Well, I guess the reason I brought it up was because you were doing that work. At the same time we were like, we need a unifying name for this because many different disciplines are describing it differently, talking different Languages to each other. And so I just always found it interesting that like, that's the thing is there's honestly no new ideas. It's just how can you turn ideas into action? And we both did that in two different ways. Like you, I have some of the foundational literature that's out there about how this is tracked and over time, what does it look like? And then we were able to build consensus on what that looked like and get that to the, the, the end goal of a diagnosis code.
What was paper two?
[00:16:02] Speaker C: I was so excited when I was on the call with you guys and I found out you were doing that. It was just like, oh, really? Yeah.
[00:16:11] Speaker B: Well, you could see it because I remember, I remember distinctly.
It must have been after you found out or something because you were.
Has been my work, like, here's my stuff. And it was just such a great like, I guess foreshadowing of how much we would work together in the future.
[00:16:29] Speaker C: Yeah, it was just confirmatory. It was like, you are doing the right thing.
Yeah, it felt really good.
The next paper was getting those same, same answers to those questions from the parents point of view. So taking from interviews I had done with parents and just in their words, what were feeding problems? Like what was their perspective on it? And really the differences between the literature and what the parents thought about it was that it looked like challenges with, you know, instead of focusing on the growth chart and you know, having inadequate weight, it was having them develop well and to be healthy and happy, having, you know, their family goals attained and you know, looking at the bigger picture for their child and for their family's life. Basically it boiled down to things like that.
[00:17:30] Speaker B: Yeah.
[00:17:32] Speaker C: So whereas the, the physician's visits were more focused on those micro interactions and on, you know, checking boxes in a, in a chart, it was the, you know, for the family, it was for their health and their, their long term, bigger picture.
[00:17:49] Speaker B: Yeah.
[00:17:50] Speaker C: And then for the third paper it was, it's that paper called It's a Long Term Process. So it was just describing what it's, it's like for families in managing the day to day with pediatric feeding disorder.
[00:18:07] Speaker B: And you've always been so good at making sure family voice is included in literature.
And I know we've been on this journey with the consortium now and doing that in a building capacity way, but I feel like your work has always been very much about honoring the lived experience and incorporating that and being able to share that in the literature.
[00:18:26] Speaker C: Definitely try to do so.
And now I do appreciate that we're Trying to also incorporate the patient point of view.
[00:18:36] Speaker B: Yeah, yeah. That's been a pivot, too.
I got us kind of on a tangent, but. Okay, so all of that was happening while Feeding Matters was growing and developing. And did you come to all the conference. Have you been out to all the conferences? Did you come in 2015 or 2017 or 2019? You definitely came in 2019.
[00:18:56] Speaker C: I think I came in. I definitely was there in 17.
I may have been there in 15 also.
[00:19:03] Speaker B: I.
Yeah, because I took over 2015 when there was, like, there was, like, a few months to go to the conference, and we had some kind of.
[00:19:14] Speaker C: I. So I may not have been there in 15, but I was definitely there in 17 and.
[00:19:19] Speaker B: Yeah. And 19.
Yeah. And so I just remember discovering in 2015 that, like, as I took on the conference, I didn't realize how many people were coming in from out of town. I was like, I didn't prepare anything for anybody out of town, but it's so great that people are coming in. And so it was like, that same revelation of, like, oh, yeah, hotel block would have been helpful for people. So to anyone out there that's listening that may have attended in 2015 and found your own way, I'm very sorry, but hopefully we made it better for you in the following years. And.
Yeah. Because then did we ask you to be Research Pillar Chair? How did you get to be. Because you were our first.
So we transitioned. We had been working since forever with a founding medical professional council, and they had been such great advisors and guides for us. But we knew we needed to convert this to ensure that there was more succession, planning, more perspectives, more people involved in this work. And so that's what. When we converted the founding medical professional council into the PFD alliance, which is now the Feeding alliance, to be more inclusive. And so in doing that, we had Research Pillar Chair, which you were the first inaugural Research Pillar Chair of the PFD Alliance.
I don't even remember how that went down, and I was very much part of it.
[00:20:34] Speaker C: Yeah, you and Chris sent me the charter and set up a phone call, and then you showed me the research pillar chair part and asked me.
[00:20:47] Speaker B: That makes sense.
[00:20:48] Speaker C: Yeah,
[00:20:51] Speaker B: that makes sense.
I want his.
Yeah. In 2019, we did the symposium where we took a deep dive in research. And I think the challenge that always happens in research is there's so much that needs to be done that it's, like, almost overwhelming as to how much needs to get done in research for this field. And I just remember you and I sitting There being like, yeah, there's a lot of work to be. To be done. And like, how do we get everyone on the same page to do it?
[00:21:20] Speaker C: Yeah. Yeah, there was a lot of.
Mm. I'm glad we took.
Took some time and were able to do some other things.
Like, I'm glad we were able to set out a longer Runway and set up things like the, the Research Initiatives Task Force.
[00:21:40] Speaker B: Yeah, I think that helped.
Cause then you didn't require like, something to happen right away. And it, it just honors the process that research is, which is like, you know, stepwise fashion, but really need to make sure we're going at the right direction in the right way and all the people on the bus with you kind of thing.
But yeah, because there was the research pillar launched. And I know we struggled with what does this look like? And so we started with like, okay, let's identify our research pillar of change and what does that look like in terms of sharing research, granting research, and identifying, like, system changing research. And so that's where we leveraged identifying, because the prevalence paper came out of some of that work, which we still reference to this day and probably needs to be updated. And we need retrospective studies on like, ARFID and PFD prevalence things. But it was helpful to actually have a foundational paper saying that there are more than 1 in 37 children that have PFD under age 5. And that said, that's talking about the national prevalence of PFD in a private insurance model. And then at a state level, we were able to show 1 in 23 or 1 in 24 children and then 3 in 5 children with a chronic health condition. And so that's, you know, important prevalence to know. Yeah.
[00:23:04] Speaker C: Now that, I mean, the diagnosis has been out for five years or, you know, as of this fall, it'll be out for five years. So it's going to be time for someone to run that.
[00:23:15] Speaker B: It will.
[00:23:18] Speaker C: Because, I mean, the, the other. The. Is it Koviak. Is that how you pronounce that? But that, that other prevalence paper, that
[00:23:23] Speaker B: was that prevalence paper. Yeah.
[00:23:25] Speaker C: But it was technically done before the diagnosis was really formally out, so it would be excellent for someone. Wink, wink, to all y' all out there. Someone really needs to run it now that we've had several years of data available out there in the big data sets.
You know, somebody with time.
I mean, it, it, it really needs to be done.
[00:23:52] Speaker B: Yeah. And it'll be interesting to watch it over time as more information gets out about the diagnosis, because I think that's the limitation is you had the diagnosis come out and people didn't know about it. And so you, you may see the difference between what was from the Koviak study and then what was from, you know, what's happening.
[00:24:11] Speaker C: It'll, it'll be super interesting. I mean, I can't wait. It's going to start coming more now that has passed and I've been waiting to see some things.
[00:24:22] Speaker B: Yeah, definitely.
And so that happened and then we really identified the need for best practices and I think that's what led to the forming of the Research Initiatives Task Force. And that's been a really nice fit. And that was kind of close to your end of your tenure as research pillar. But you were, you still were allowed to kind of stay involved in research in that way through that task force. And that's where the consortium was born out of. That's where the PFDR FID work was born out of. So a lot of game changing things coming out of that task force as well because we've been able to like be nimble and somewhat reactive in areas where it made sense, but also proactive in really looking at like what, like another study that came out of that work was the provider survey and looking at how qualified do providers feel to treat PFD and how well equipped do they feel.
So a lot of work in the research world and I feel like your influence on us has happened in many different ways.
Not only from some of those early conversations around, you know, where are the gaps in research and where is like, you know, the name issue in and of itself, but then also the incorporation of lived experience, patients and families. And so I'm just so thankful that you kind of found us randomly so long ago, but you've been such a part of the work that we do now and where we're headed as well. So I just want to say thank you.
[00:25:54] Speaker C: Oh, thank you. I mean Feeding Matters, Jacqueline everybody. I mean it's been a huge pleasure. I have so much fun here.
[00:26:03] Speaker B: What's your favorite memory in the like or do you have a favorite memory or what's something random? I haven't figured out my 20th anniversary question.
[00:26:14] Speaker C: Favorite.
I think my favorite conference was this last one. I just really loved seeing all the people from the consortium there and then having the research prior to meeting because I mean I, I really dig it when I am around people who are excited about getting decide research and other family members and patients getting jazzed about research and then to have been in a like a solid day's Worth of meeting where all these people are just so excited about Feeding Research.
It was.
That was a dream. I. I don't know. That was so happy time for me all day.
[00:27:05] Speaker B: Yeah, that was a dream. I totally agree with that. It was amazing conference and, like, and it was so cool to. To see.
I don't. I'm now gonna get it wrong, but someone told us maybe on this that, like, in previous conferences, you would see that there's, like, people that.
That, like, at those conferences, you could tell who the parents were and you could tell who the professionals were. And that this conference, you could. You could really see that everybody was, like, kind of level playing field. We listen, respect and honor each other and the expertise that they bring based on discipline, experience or whatever that looks like.
I. I really did like this conference, too.
Yeah, that is a great one.
[00:27:52] Speaker C: Yeah, I. I liked how they all felt empowered and they all felt ready to just.
[00:27:57] Speaker B: Yeah.
[00:27:58] Speaker C: Up and speak their mind.
[00:28:00] Speaker B: Answer a question or like. Yeah. Speak their mind or any of that.
[00:28:03] Speaker C: Yeah, I love it.
[00:28:07] Speaker B: Cool. Well, you'll be with me as we're doing some of these 20th anniversary interviews. So for those of you that are out there that are listening and have been with us in this journey the last, you know, 10, 15, or even 20 years, we'd love to hear from you and love to hear your stories of Feeding Matters. We don't do this alone, and it's all of you that make this happen. And so it's been great to shed the light on how Haley's been a part of this journey and would love to do that for all of you.
And before we kind of end today, I realized last time, I don't think we talked about the 20th anniversary logo. Did you see it, Haley?
I did. It's so cute, isn't it?
[00:28:49] Speaker C: Yes. So should we describe it for people?
[00:28:52] Speaker B: Yeah, that's true. For those audio listeners.
Probably everybody on. Everybody is only available on audio.
It's the end of the day. It's.
[00:29:04] Speaker C: It's the. It's a Popsicle.
[00:29:06] Speaker B: It's a Popsicle. So it honors our history of being a parent. Organized partnership, so supporting infants and children, learning to eat. It's a Popsicle. But then it also has. And blends the future. So it has Feeding Matters new logo as a part of it as well. And so I figured while we're talking logos, we would also talk about what makes Feeding Matters logo. Feeding Matters logo. And one of our earliest taglines. And I. It'll be interesting if you remember this was take your place at the table. Do you remember that?
[00:29:40] Speaker C: Yeah.
[00:29:40] Speaker B: Yeah, so. And we truly believe that.
That's why we continue to push for conversations to happen.
Even when people are disagreeing or even when the fields are in silos or, you know, building bridges of conversation. Everybody is welcome at the table. Everybody needs to have conversation at the table. And so that has been such a part of our organization and our history that like, that was the logo. And we, as we were exploring what our name change was, Shannon got up there and was like, it's like a table. Like, everybody's welcome at the table. And she just draws these four, these, these circles. And it was like, you know, we've got education, advocacy, research, treatment and supports in the middle, and we've got medical people there, we've got feeding skill people there, we've got like, psych people there, we've got nutrition people there, and families are at the center. And so it was not only an. A representation of who we are as organization and who we strive to be as an organization, but our logo is a table. And it was funny because I was referencing this with the team the other day. I was like, yeah, like the table.
And a newer member was like, oh, I didn't know it was a table. And so for those of you that don't know, Feeding Matters logo is a table. It's to represent everybody coming to the table to solve this issue together.
And in addition to that, it was also kind of the.
The lead to PFD in and of itself too. So there's like a. A hint at Feeding Matters in the
[00:31:10] Speaker C: PFD workflow with the four domains around them.
[00:31:12] Speaker B: Yep, with the four domains too.
[00:31:14] Speaker C: See, sometimes we need a refresher, Jacqueline.
[00:31:17] Speaker B: Yeah, well, that's. It's so funny cuz I used to be the person that was like, we shouldn't say this is how it's always been done. Like, that's not innovative. You know, sometimes it's helpful, but like, we've gotta make sure we're solving problems. But now I've been here for so long that I gotta gut check myself sometimes on like, no, I need to be sharing some of these stories or I. We can't always do things the way they've been done.
[00:31:40] Speaker C: It's an anniversary. You have to.
[00:31:43] Speaker B: Yes. Yeah, so I think that's. That's our little trivia question is it's a table. Our logo is a table. So.
Yeah. But this year our logo is a popsicle, since it's the first one.
[00:31:56] Speaker C: Can I ask you one of your favorite memories?
[00:32:00] Speaker B: Great.
Call.
I will tell you. One of my favorite memories is watching Shannon.
I mean, a lot of times when I'm. When Shannon's giving like an inspiring speech, it's like, always great. But when we had. So when we had those conferences that were in person the days after used to follow a consortium meeting of the Medical Professional Council. Similar thing happens now with our alliance members and leaders.
And we had had the idea that PFD needs to be its own name for a while or some sort of identity behind it.
And I think I have it on video still. I definitely have one of her speeches on video, whether it was that or in the consensus meeting.
But she basically was saying, like, if, you know, if I have cancer and I tell you I have cancer, you know what that means and you know, the impact on my family and you know, the devastation that, like, road that, like, we are trying to follow and, and how that changes our life upside down. But if, if you don't know what, what we're facing, when we tell you we've got feeding problems or feeding difficulties or they're struggling to eat, like, you don't get the true struggle or the true journey in a way that you could support or include us.
And it was just a really passionate speech. And she did a similar one at the consensus meeting.
And so that's something I will always remember because I don't think that I realized at the time what that would mean. So it's been really cool to not only be in that moment of seeing, like, we've identified this need, that people still are missing it, even though we've had all of these names for this issue, but then to see it later on where there's, like, sections of national association conferences dedicated to pfd. And like, I. I was speaking to a GI the other day, and these.
She has these doctors, they came in, they described themselves as PFD doctors. And I was like.
I was like, blown away because that's what's so cool about system change work is it's what can you do that pulls the biggest lever, but then makes exponential impact for years to come.
And communication and language and being able to have teams talk to one another is so, so important. And so it's cool to see that, like, that work is getting out there in a way that, like, we're never even going to be a part of. And that's a good thing.
So that's kind of my favorite memory.
[00:34:47] Speaker C: That's a good one.
[00:34:50] Speaker B: Well, I'm excited to continue this walk down memory lane with you with our future guests.
But for now, thank you for joining us in 2026 and we will see you next week.
Bye bye Haley. And bye everyone.
[00:35:10] Speaker A: When families face food disruption or uncertainty, every meal can feel even more overwhelming, especially with a child who has feeding differences.
That's why Feeding Matters created a Food Access Resources page on their It's Not Picky Eating website to help families find state and national resources, as well as guidance and support through Feeding Matters Regional Community Councils. You'll also find a guide to help food banks and community partners better support families of children with feeding disorders and differences, as well as a guide for therapy offices to create community food tables, visit itsnotpickyeating.org and click the link Food Access Resources.
