Latest / Tom's Hirschsprung's Podcast / Episode 18 - Part 1 of my interview with REACH HD Canada President Liz Crawford

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Episode 18 - Part 1 of my interview with REACH HD Canada President Liz Crawford · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshprung's Podcast, where I provide a look into the
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remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Hello and
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welcome to episode eighteen of Tom's Hirshprung's Podcast. My guest today is a movie
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actress, the founder of her HQ, the owner of Swiss Model Management,
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a fashion stylist, freelance journalist, international model, the vice president of reach
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HD USA as well as the marketing communications and also the president of reach HD
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Canada. My guest today is Liz Crawford. Welcome eighty six for having me.
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Now, you're somebody that that I've been wanting to interview, to talk
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to from day one from this podcast because you reach ahd IS and we'll talk
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about it soon. But rechhd is is huge, and now that you've expanded
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into Canada in twenty ninety, it's just getting bigger and bigger and bigger.
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So what I believe from the research I've done, biggest Hirshbroung's charity community in
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the world. Yeah, correct, Yeah, I couldn't find any bigger that.
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That was my sort of reasoning for it, but you would be yes,
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I think when when people like me could come across REACHHD will be really
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surprised to see just how how and almost it is in such a short space
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of time. And I know what we'll get to the USA portion and the
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Canada portion later on. But if I could just start sort with you at
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the beginning, because you you have a child, Malachi who has hers sprunx,
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and take me back to sort of two thousand and eight when when he
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was born. Okay, well, yes, my son Malachi was born in
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November of two thousand and eight, and you know, it was funny he
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when he was born, I sent, as I think a lot of mums
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do, I sent, something was just slightly off. He's my second child,
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so he really wasn't he wasn't really as alert, he wasn't crying,
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he wasn't feeding. He just dot of seem really le bargic. And it
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was a really long labor and delivery. So the doctors and nurses kept saying,
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no, you know, he's just hired, and I'm thinking, I
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don't know about that. Yeah, he definitely has youth on his side.
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Have you been at being you know. This went on for about twenty four
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hours where he just really he wouldn't eat, he wouldn't engage, and so
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finally they said, okay, you might be on the suddening, and they
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took him to check him out, and what they realized right away was that
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he had this distension in his automen and he just had no interest in feeding,
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and so they knew that there was an issue, and he was moved
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into the ICU unit, where we spent the first month of his life.
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And for any parent who's been there, it's horrible and terrifying, and the
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unknowns are excruciating. They are excruciating pain, you know, the pain that
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you go through not knowing is my child ever coming home? What are we
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dealing with here? What does this look like? And of course you know
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hershbrun's being not overly predominant in the firsts, and especially in cities where I'm
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only from a city of a million people, which doesn't seem too terribly small,
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but it does mean that there's only one berth every few years or when
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happy of a child with hers friends, so it's not like they see it
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all the time. And you know, it took three four weeks before we
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were able to receive a diagnosis. So up until that time, you know,
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they start with the worst case scenario, so your child has some you
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know, life ending metabolic disease, and they're like, oh wow, okay,
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so we start there and we work our way backwards and so yeah,
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it was a really really life altering, difficult time, terrifying. And then
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by the time we actually got the diagnoses, he was a month old and
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doctor Wiseman came in and I love the fact that his name was wise Man
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because he honestly looked at Melchai and first of all, made a million jokes
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about how he's the only child that looks like a toddler the ICU because it's
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mostly for me. Baby said, my sin was two feet at birth and
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almost eleven pounds, except he pretty much walked out of the womb and into
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the ICU unit. And then he took a look at his ab demand and
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he did a you know, a dilation just out of in state, and
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of course he had movement. And then he looked him he goes, for
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sure, this is Hirshprons and I was like, what does that mean?
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And I have no idea, I've never heard of this. And he said
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oh, well, you know, you'll have surgery and he'll go home and
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it's all gonna be okay. That was the best thing that could ever have
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happened. So for me at that moment, getting in the diagnosed he said
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hirshbrns was like party, this is celebnie randam sure midnight they said on parents
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it would have been devastating, But at that point I was like, I
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am signing up and I will take it. You know. Oh that was
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that was the beginning. And then of course you think it just that simple.
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Okay, so we take him a hound, there's a surgery and to
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that, and that's when we began to learn that the real journey was just
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beginning. Yeah, but that's that's interesting you say that you kind of celebrated
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the hirsbrugs and sucks because I guess as if they give you the worst case
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scenario and then you're going, oh, well, it's not the worst case
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scenario, it's humushprungs Okay. I think that's that it might be the way
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of the way of doing things, always give the worst case and then an
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we think it lost a sport. I think yes, because I'm I have
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a red Malachi's story as well, and you have a really great YouTube video
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on the reach HD Canada website and it strucktal with me because it's very similar
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to mine. Mine was most Hirschbrungs is two or three days, I think
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within within diagnosis. Mine was a lot later in three weeks. I'm also
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second child as well, so so a lot of a lot of the a
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lot of what Malachite sort of went through and had kind of struck a chord
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along with me, but kind of so from there, you know what hirshbrogsy
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is down as you. He's had a few surgeries. But I've seen on
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your blog that you wanted to all started a blog sorry, where you wanted
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to start connecting with people who had had this condition and sort of wanting to
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know more. How did you think about that? Well, so I wanted
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to I wanted information at that time in two thousand and eight. I'm sure
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you know this and your mother would know this, that there wasn't a lot
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of information on the true there was a lot of reliable information and for a
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lot of the parent groups. You know, if you have a child who
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was born with Hershbrogs disease, has a surgery and pretty much has no complications.
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You know, where you're not on community, you're not sharing because you
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don't have any concern. So when I went to them, I was like,
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oh no, oh no, right, it's often we're looking for information
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and we're sharing the worst case scenarios. And so I had to kind of
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wrap my head around that, like okay, but what is the best possible
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outcome and how do I get there? Right? And so I thought,
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Okay, I'm going to start a community of my own and I'm going to
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start asking a lot of questions and I'm going to find out and put together
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these pieces because especially in Canada, and I can't speak to how it is
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in the UK, but I know that often babies they you know, they're
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born, they have their surgery somewhere between you know, usually one month and
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six months is the standard, and they have a little follow up. But
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then it's kind of like, well they're going to be okay now, and
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you kind of just kind of get moved out of the whole pediatric surgery circle
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and I'm well, wait a sec, like there's all these like unusual things
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happening. And Melanche did have chronic instructions. He one time was we had
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to rush him in because it had entercolitis. So he did seem to be
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a more complicated case with more you know, he was prone to more side
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effects. And this was you know, even after surgery. So we were
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dealing with all of this, and I thought, okay, I need to
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learn more. There's no great resource for finding information, so I started the
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community, the Hirschfrogs community on Facebook. And I also know, for what
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I do for a living, it's impossible to track down the one in However
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many you know that have it and invite them to the group. How am
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I going to get people to join? Right? So then I decided to
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launch a campaign. In hindsight, maybe some people thought, oh, it's
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not really a great taste. However, however it so I am very connected
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in my industry. So I asked my friends if they would wear a T
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shirt that a company, Silver Jeans, provided me with a couple of thousand
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T shirts that said Hirshrin's Community with the slogan shit happens because when it does
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happen, as you know, it happened. And that was my personal experience
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and being in and out of hospitals with multiple ballot instructions and less all of
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my you know model friends. They're all standing in a room, you know,
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foreign heels and made up to the viiance and they're completely getting shit and
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one day one of this letter goes, oh, well shit happens. I
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thought it does. Well, we wanted to, We really really wanted to,
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and with hirsh friends, when it does, like, we've all been
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there, right, And so that's where the slogan started. We put this
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campaign and we were so fortunate we had a lot of you know, really
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famous supermodels get on the campaign. We had what is her name from Ship's
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Creek she won awards, the lead actress from Ship's Creek, Oh what is
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her name? She's more in the show. But we've had we've had just
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all kinds of stars. Then back a campaign out which made it go viral,
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and that sort of brought people into the community. So when you googled
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hersh friend's disease or whatever, you would often see the campaign. You would
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see the celebrities behind the campaign, and it drove you to the community.
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So the community really started to grow and that was, you know, kind
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of an amazing thing for fact finding I don't. I think with the slogan
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itself, I think it's wonderful and to the point, I mean, you
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want you there's no point having a logo and saying I see them all the
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time, you know we you look, you see them and you go what
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is that? You know? And and and it has like a null the
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script fond so that null the script symbol, and you think, what what
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is that? But at least with that sligo, everyone knows what that is,
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right, and well had it capture to it? Yeah, yeah,
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and you know what it is. So no, I think certainly when I
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was researching for when I started this podcast a few months ago, that was
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one of the first things that came off and I thought, well, this
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is interesting and and even if even if I think, even if you haven't
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got Hersbrungs or connected with Hersprungs, you're probably still going to click on it
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because it's interesting. Yes, and it's fun and so as far as awareness,
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and it was Catherine O'Hara was the actress, and so it was yeah,
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it was really Yeah, it was really fun. I'm sure I offended
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a to you, which was never my intention, but to go from my
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world, which was so not about PHO prior to my son me and about
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beauty and fashion and all those up to standing in a hospital room with six
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of my friends and everybody is just so glamorous and literally everybody got shit on
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that thet I was just dig laughing up. So we're in it, our
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girls, and that was just kind of Howard. I love the way that
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you can marry the two though. I think that's that's fantastic that you can
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take from from one world and go straight into another. I think that's brilliant.
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Yeah, so yeah, I feel blessed. So the PA the page
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itself is still up and still active of the moments, so it's well,
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it's well worth and and for anybody who hasn't seen it, and you just
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give the the title of the page, it's the hair Strins community. Yeah.
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Nice and to the point if everyone does what it is and then that
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that's sort of there. And I've seen quite a bit of it as well,
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and there people sort of post the stories and they they sort of and
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it's all. And what I quite like, certainly from what I got from
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your videos and pages is that you're very positive about hersch Brun's which is kind
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of my amo as well in terms of starting this podcast, it's about it's
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not about necessarily the doom and the globe and whatever. It's about raising awareness,
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yes, but positivity as well. And that's that's what I love about
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you, and I love about rechag D as well. Inspire desperately wanted you
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on the podcast how so so sort of from so from two thousand and eight
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malarch I was born and then when he was three, twenty eleven, reach
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HD USA started. How did you become involved in rechach to USA? Well,
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Doctor Allen gall soon happened to see the Shit Happens campaign and here res
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and he had as a lab at Boston Mass General where he is steady or
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Hirsprungs and stem cell research, your relation to finding a cure for hirshprungs.
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And he is just an absolute amazing man who once told me Liz, I
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make up thinking about hirshbries and I was sleep thinking about Hirschbrugs. Well,
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I said we should be working on that. But his devotion and dedication to
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you know, treating and helping children with this disease as well as finding a
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cure is you know, bar Non incredible, and so he reached out and
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we started a conversation and he said, well, there's a family here that's
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that's starting a found foundation for Hirshbries, the Sneadi family, Eric and Isabelle
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and their son Adrian has Hirschbrugs and down synderm and they want to do more,
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get more active, which you want to get involved somehow, and so
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of course this interested me. And at the same time I was working with
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our pediatric surgeons here at our hospital. They Doctor Kaiser had noted that our
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Hirsh Frinds community had really grow and there had been quite a bit of press
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about it in our city, and so he was really interested on how the
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comparison is between gathering information and a platform like this and in clinic and sort
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of the differences between and how this could be valuable. So I joined a
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research team here at the same time and we created a survey tool for the
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Hirshprins community where we could extract we could run surveys to extract responses and create
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and actually quantify this research to help you get a better understanding, especially of
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post surgery outcomes. And so I was doing this with this pediatric surgical team
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here, and then doctor Goldstein called that. I thought this is called kind
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of really interesting. I, you know, I'm absolutely on board with whatever,
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because I want to see the advancement. I want doctors talking about HRSH
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friends, I want people interested in finding a cure. I want the best
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outcome for all of our kids. So I got on a plane that I
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went to Boston and I toured the lab and met doctor Goldstein and the other
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you know, doctors and researchers and met the Shanadi and decided that I would
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join backboard. But at the same time I was doing the research for a
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few years with our group here. So it was kind of cool because in
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the end, now like I have doctors from doctor Kaises on our board here
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doctor Goldstein's, so we have a lot of experts and amazing uh doctors on
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both sides out Kada and the US. Fantastic. I think it kind of
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goes back to what we said at the stop, feel very very busy.
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Yeah, we kick all over the place in Boston and win a bag and
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all over the place. So then the board starts and there's currently six members
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on the board. Is that correct in the US? Yeah? Yes,
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And then yes, Canada, there's three. I think there's actually four or
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five. But yes, if some over jumped to Langer, he's on both,
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like we have hot Cross that work. I think that's where I got
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confused. Yes, yeah, and I'm on both. So yeah, we're
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doing double duty, very busy. So then it starts in twenty eleven.
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And just also, I know we've mentioned REACH quite quite a few times,
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but you just sort of go through what reach or how he came to the
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name reach and what they all the letters stamp right, Well, the stadings
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actually came I believe we're the ones that came up the name. And it's
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research, education, awareness for children with Hirshburn's disease. So that was that's
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sort of our mandate and our the foundation does annual grant so fundraising of course,
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which is really important to fund research, also funding programs. We're looking
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at an app development, there's all kinds of things that we want to do
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in that education for parents that's so key and crucially important because you know,
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doctor Google is not always super reliable. So well, the idea of getting
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you know, some of the world's best you know, doctors, pediatric surgeons,
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we have well we have everything or pediatric surgeons, We consult with psychologists,
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dietitians, nutrition ives, the whole gamut to look at the issues coming
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up and creating sort of a care program, if you will, for all
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the different issues that come up. Is incredible. Like it's incredible because before
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the Foundation, we didn't have this, We didn't have these, sorry says
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No. Absolutely, And I know I talk about this a lot in various
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episodes with with other people that you know. Nineteen ninety two, when I
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was born, there was next to nothing, and you know, I mean
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internet was very whether it was in the rounds then no idea, but the
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fact that there there are so many more things out and and especially what REACH
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has been doing for the past fifteen years, and there's just so much more
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than there was before. And the work that you continually do, which changed
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the USA and Canada, is that there'll be more and more in future.
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So that now when people are born with Hirshprung's, people can or doctors or
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or what I can now say look at this, look at that, you
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know, and I think that that's that's fantastic, and I think that that's
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that's very commendable. I think that's brilliant, and then I will just talk
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about a few of the features as well, where sort of going through the
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reach HD website is that you have an HD passport, which I think is
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just the best idea. I think it's fantastic. You would not believe how
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many times I've been sick and died of trying to explain hershbruns in three sentences.
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It's impossible, And to have to have that passport is such a brilliant
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idea. How did you how did you come up with that? Well,
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one of the things that we really have the advantage of understanding is what's really
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actually we really actually do you have a great understanding of what's happening in our
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community. And it's because we are the hub. So often a lot of
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our physicians will call or they'll email and say have you heard of this or
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someone's presenting this, and it's like, well, yeah, because we're sort
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of on the fread lines of families and patients and moms and dads calling and
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say my child was born, Like what do we expect for this is happening
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or we're having this complication that's happening. And one of the things that we
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really noted through all of that was, hmm, there seems to be a
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common issue here where families are showing up an emergency and emergency room doctors aren't
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necessarily they don't have a great knowledge of hirshbruns or what the potential complications can
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be. And you know, it presents itself into place, will present itself
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quite often just like a flu. So you know, diarrhea, vomiting,
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dissension, fever, that could be one of one hundred things, right and
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so, but it's dangerous because entercolitis is you know, can be a really
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dangerous and life threatening complication of hush bringstancease. So, in an effort to
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make to create more of an awareness that parents can advocate for their children,
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we wanted to create something that was legitimized and came from the foundation that sent
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basically came this child and it's you know, is a member of our community.
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These things are what to be kind of aware of and this was the
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last time he was in the hospital. This is is attendee and it just
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kind of allows parents to go, no, wait, don't don't push me
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aside or just hear this out or hear you look and be able to sort
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of access that in for me shake quicker, Yeah, said, I think
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that's fantastic. It's it's from from seeing it as well. It's it's concise,
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it's to the point it tells you exactly what you need to know without
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going on and going sort of too medical, too medical as such. But
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I think that's that's incredibly good. And again if it's if somebody is listening
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and they they want one of those, how do they go about that?
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They're are our websites. You can download them and you can print one off
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and it's yours stick to get your wallet. We also, if you ever
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need anything, you can email us. There's an email on our website and
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we'll send you whatever you need. Yeah, we's pretty accessible. We have
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some of our staff so just to deal with all the things that come through,
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so we're pretty accessible. Definitely, Definitely, that's a wonderful initiative.
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And another one as well, another brilliant initiative, the Reach Fellowship program that
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has now been going for quite a while. How how has that come about?
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How does that work? Right? Well, that was really I think
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driven more by our doctors on our board and they obviously have it inside knowledge
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of their world and sort of the importance of you know, being able to
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train doctors and that will specialize or have a special interest or a great amount
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of knowledge in hirshbrus because that's one of the obstacles we see, right,
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is that when you were born for rare disease, and there's not one doctor
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that gets to have a lot of experience in dealing with that one disease.
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There might be a handful who have a special interest, like doctor Langer,
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doctor Goldstein, but they most just you know, get one every once in
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a while. So training more doctors to have that special interest that we can
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refer patients and families to that can handle more complicated cases or that are just
25:22
simply on staff at a hospital that what a child is born if no one
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else really knows, because doctors get a lot of the information from one another.
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This guy doctor so and so or her, you know, she knows,
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go to her, she knows, you know, in that kind of
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all behind the fellowship program. Fantastic, that's and you obviously send these doctors
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to specialist facility, is that right? Yeah, they've come to Boston to
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work with doctor Goldstein. I know that. So yeah, so we do,
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and I've seen as well on your website you you not only just sort
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of send them there, you support them a lot as well, sort of
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financially, whether it be travel, air travel, accommodation meals, et cetera.
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So you go the whole nine yards with these people. You take care
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of them, which I think it's fantastic, yes, because it's really an
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important initiative. And so we fundraised primarily for two different our fellowship grant and
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as well as a research grant every year. So we are fundraising to allocate
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funds towards obviously finding a cure and better treatments for Hirshbrug's disease, but also
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training were doctors to be able to provide better treatment for families. So that
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was it to your major, yeah, I believe. And on the research
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grant as well, you offer a research grand every year and this goes to
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sort of all around the world. I was looking at the last the last
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five winners of the Research Grand, so they're from Israel, Belgium, Hong
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Kong, the US, Australia, so really really the worldwide, just as
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far as you can get apart provided sort of over three hundred thousand dollars worth
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garangs and again you could just sort of talk through and how that all came
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about and how that works as well. Right well, the research grants obviously
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are a priority because you know, we're all here to hopefully one day,
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you know, have a solution for Hirshbrinds disease, to learn and understand where
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to find a cure. I mean, that's the that's the ultimate goals.
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So we have to be paying attention to what research is being done and even
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you know, it just it's something that even if it you know, it
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always just we know it improves the care of kids who have Hirshprinds disease.
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So it's not just that out for the distance thing, it's that right now
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thing. It has an impact, and so that's been the research funding.
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The research has been a priority from d Ony that we put together a committee
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that we or not coledgeable people usually can be so a lot of the doctors
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that to read through the grants every year and they really try to support like,
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as you said, different areas, Like it's really global because we understand
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and recognize that there are different populations too that have an increased number of herschriscationis
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or you know, it's not really prevalent, or it's somehow you know,
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and by diversifying it, we all learn more. And so our doctors are
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really committed into the research and making sure that you know, it's widespread that
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we're supporting, you know, sort of a global initiative. Brilliant. Absolutely.
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Now that sort of wraps us up for part one. Just to give
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people a little bit of a teaser. For part two, we're going to
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be talking about your your own business, your RECHHD Canada or your your own
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pleasanency sorry, yeah, your own business. But where you how and how
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that came about out and what they've got planned in the future. So we
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will see you all in part two. Excellent, Thank you so much.
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Thank you for listening to the podcast. Find us on Instagram Tom's Underscore Hirshbrun's
29:17
Underscore podcast. Listen to previous episodes on Spotify by searching Tom's Hirshbrung's podcast.