Latest / Tom's Hirschsprung's Podcast / Episode 19 - Part 2 of my interview with REACH HD Canada President Liz Crawford

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Episode 19 - Part 2 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 our provider look into the remarkable
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experiences of the most inspiring people around Hirshprung's disease and sports. Hello and welcome
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to episode nineteen of Tom's Hirshprung's Podcast. This is Part two with Liz Arawford
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where we're going to talk about reach HD Canada. She is now the resident
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of we'll talk about how it was formed, Howard White was formed, and
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why they're spreading from America to Canada, and also what they do and plans
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for the future. So welcome back, Liz, Well, thank you and
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that I'm here. Hi. Now, as we said, we will talk
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about reach HD Canada, formed in Stabruary of twenty nineteen. Now, do
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a lot of work in the US. You obviously are based in Canada,
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so it would would make sense I would imagine that you would have a Canadian
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branch. But what made you think, apart from obviusly being in Canada made
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you think, right, I'm going to now help this company to branch out
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into Canada. Well, I think a couple of things. One, it
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is our goal that our foundation has branches everywhere. I mean that would be
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the ultimate goall working together and branching out that going to you know, that's
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what we'd like to do also, and for fundraising of course, so when
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you're raising funds in Canada, they have there's implications to moving them outside of
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the country, so keeping them in Canada, and we started quite a few
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fundraising initiatives and that's kind of really where we thought, okay, well,
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and also the Canadian medical system is a little bit different than the American middle
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system, so sometimes there's different issues that have to be addressed. So for
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those three reasons, we thought we should form another branch of it that will
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deal with some of the things that are different and apart from the United States.
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As well as we can raise money, all of it goes into the
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same initiatives research, you know, and so that's not the difference. It's
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just really being able to fundraise effectively in our own country as well as deal
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with some of the issues that might be a little bit different than the United
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States. Fanstick now, you kicked off the reach HD group with something called
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the Vanity Party, which lived a lot of fun well, raised over thirty
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thousand US dollars. I can just talk to us a bit about how that
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came about and what that was like. Yes, and we had another one
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this left fall, so after COVID Week and then we're back to planning the
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next one in September. So back to my sort of a little politically and
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correct possibly I don't know Verity Party, but you know, it's my industry,
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and so I really think that when it comes to fundraising, you have
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to draw from your network. Your network with people you know and similar interests,
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and mine happens to refashion. So we came up with this concept,
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let's sort of this really fabulous fashion party and we'll get sponsors, we'll do
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you have a fashion show. Because these are all things I could do in
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my sleep. So I'm not trying to reinvent the wheel. Here. Were
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to do things that I know how to do that I can pull on the
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race flaws to sport. It is my network, and so we created the
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Verity Party, which was fun and fabulous. It's always sold out and it's
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a really great evening that bring us together, you know, sort of my
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industry and raises awareness about this disease and raises fun. So yeah, it's
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been a successful event and we're planning the next one for September of this year,
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and we're really excited about some of the spots that have come on board.
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And yeah, so our fundraising initiatives they vary. We obviously we have
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a walk that happens and it's a global thing. It's through race rosters,
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so we encourage you know, people to create their own teams through the month
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of June typically, and you know, we do have the walk. We
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have families that have had pickleball tournaments and raise quite a lot of money.
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We've had families that have done you know, all kinds of different things.
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We've done jewelry. We've collaborated with different well known jewelry designers that are certain
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percentage has gone back to the Foundly. So there's a lot of different initiatives.
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Mine just it's what I know. We keep in that you know where
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you go because it's my thing. But yeah, fantastic, no, and
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I fully get that go with go with what you know, and go go
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with use your contact because if they're there, why why don't you use them?
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Exactly, And everything I do tends to be a little tongue in cheek,
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so it's a little cheeky like the Verity Party because we're in fashion.
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It's just funny and it's ridiculous and you know what I mean, and shit
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happens. I mean, but I mean I have to be honest. Probably
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not for everyone to say nowt but you know what I mean. But really
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it's all just done and tongue in cheap, you know. But yeah,
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for a great cause as well, all for a great pause. Yes,
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it's like when they were doing the breast cancer there was a huge event and
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went across Canada and I think into the US and it was a big party
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kind of similar. It was called the Booby Ball, and you know,
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again it was just really fun and it was a fun day and it raised
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a ton of awareness and funds and you know, it was a little tongue
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in cheap seems sort of it. Yeah, So what we said in the
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first episode, if you go with a slogan like shit happens. If you
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go with the slogan and people know what it is, there's no point with
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something that's you know, people don't know what it is or you have to
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re explain it several times. But not I think that's fantastic. And as
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we said, lost of people got involved. I did see a big Jaguar
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in the middle in the middle of the floor, which looked fantastic. I
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have to say it a bit. That was a crowd bummer. Yes,
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well it was the Jaguar dealership that sponsored the night, so it was great.
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Yeah, you know, fast cars of the passion very vain, isn't
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it likely? You definitely know your marketing. It's but it's it's so.
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So when if we talk about reach HD Canada as well sets it up in
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twenty ninety, who is on the board to that, Well, there's myself
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and one of our staff that are full time staff, and then doctor Kaiser.
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So doctor Richard Kaiser has been He's been incredible through this entire journey,
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especially for me personally. He's the one that really spearheaded all the research in
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terms of you know, big fancy medical terms. For the research was integrative
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knowledge translation, which in Layman's terms means using social media platforms or any kind
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of platform and you know, getting information from the families and parents to survey.
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And one of the interesting things that he did that was such a game
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changer is he took the initiative after we ran surveys through the online platforms and
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gathered all of that information from families and we created the sort of high what
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are the biggest post concerns that you have or struggles or complications And then he
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sent the same questions to the Canadian Association of Pediatric Surgeons. What do you
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think patients and families struggle with the most? They were so disconnected life they
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were nowhere near in the same realm really like families were nutrition like you know,
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allergies and not being able to do this loose s bowels and what they
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thought. And so we noticed that there was a way there is a big
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disconnection here and we have to address that. So he has been really instrumental
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in looking at a lot of the data and figuring out where we need to
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work to bring together those two communities. And as a result, here at
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our hospital, they'd implemented a bowel management clinic which does really thorough follow up
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up for years after a child's surgery. Now, so they've he's he's really
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spearheaded a lot of change. So he's on our board obviously, and our
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favorite nurse practitioner ever, Cindy, who is just her commitment to families is
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I mean, it's crazy sometimes she's at the late or she doesn't even take
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holidays. You can text Cindy at anytime and ask about you know whatever,
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you know, an irrigation kid. She's like, well, wait, I'll
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call the I'll call the drugstournal. I'll make sure they have this because you
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need this size. And she's just amazing. And so of course Cindy,
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who do have a different perspective being the nurse practitioner, she's often, you
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know, the first call before it gets to the doctor, and so she
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raised a lot of unique information to the group as well. No, that's
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that's fantastic. You've got everybody pulling in the right direction, but you've also
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got people with different backgrounds, different stories coming out of from different angles.
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So it's not just the same message or the same thing you'd be over and
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over again. No, I think that's actually the beautiful thing about this foundation.
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I think when Eric and Isabel started this foundation, they had worked really
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close with doctor Goldstein, and I think that, you know, in the
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last fifteen years, it's just I think, well, I think Eric builds
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companies for a living or something, or he's just really he's really business savvy,
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so he kind of understood. You know, we need to have you
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know, representatives from every area because this foundation has to operate like a business,
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has to raise money and allocate money, has to stay up loud.
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We all are volunteers, so we need to have someone who's in a paid
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position that can you know, really service families. We need to have medical
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experts that can share the right knowledge. We need to have everybody working together
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in a round table so things don't get missed and things get addressed and we're
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the most effective that we could beat and I think that we actually are.
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We're really achieved that definitely, but it definitely sounds like you're doing an awful
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lot of good work. So yes, definitely on the right part. If
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you talk about reach reach HD Canada just by itsells are the aims and objectives?
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I know you talked about a little bit different in terms of medical and
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Canada and the US, but USA are the aims and objectives still the same
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for both? The objectives are still this theme. We just deal with different
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situations because we are the only foundation I think that really is out there with
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all of the different resources that we have. We deal a lot with families
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and patient concerns and emergency situations the odd times. So when we get an
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email and we can tell you know, this is a really distraught model.
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We've had emails like it's unbelievable to me. We had a child one time
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traveling with their family in Japan and they I believe and I don't. I
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don't want to be quoting because I but I believe there was something with the
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poland started to come out of the wreck Dium and there was some sort of
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like crazy situation and they were at a complete panic. So they emailed us,
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and right away I bounced over to doctor Goldstein with sort of the stars
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like you need to look at this as soon as possible. He looks at
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it, he gets on the phone, or he emails somebody in Japan,
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and within two hours that child is seeing somebody with a special interest in Hirshfrog
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was in Japan, an American kid that was traveling this family, Like what
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I like, these are the kinds of resources that are so incredible. But
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we do know that like with Canada, in the US, the primary differences
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is that the United States cities, there's way more cities, there's way more
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population, there's way more access in Canada, Like if I were to get
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in my car and drive, the nearest biggest city is twenty four hours one
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way and like thirteen hours, So it's very different. And well, we
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have kids who you know, don't have that accessibility, and so we we
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also don't have the same insurance providers or whatever. So we have families in
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Canada who honestly can't have to pay for and can to afford the irrigation kits
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or some of the supplies that are needed because they're not covered in our assurance.
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So that is a different issue than maybe what the United States might have.
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So we've started like a little bit of a funding program to fund like
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these kits because we know that there's children living with Hirschbrug's in remote communities where
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they don't have access to just the things that they need in order to have
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a bout movement. It's just so bad basic And so there are some things
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that are a bit different for sure. And that's where as you said,
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reach come in and are really really important and really really helpful, and that
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and amongst lots of other things that we talked about in Part one, I
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also want to talk about You've talked about having like a network of specialists.
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Yeah, and you talked about having a network with specialists sort of all around
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the world, and then the Japan story is incredible. You managed to manage
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to get U within two hours in Japan, which is absolutely incredible. But
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are you looking to sort of brand right the way around the world. Definitely,
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always, because we know there's always going to be children born in other
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countries and they're going to need some sort of referral or they're going to need
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advice. It's it's it's inevitable, and so we really rely heavily on doctor
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Langer in doctor for Goldstein to network with other doctors that they know, well,
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this guy knows a lot about this, or this woman knows a lot
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about you know, the post outcomes, you know, complications, or this
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one's researching this, and so they've really been the ones to lead that and
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bring other physicians into the fold as well as they both educate a lot,
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Like I know doctor Langer travels and teaches the surgeries. I know he is
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really keen on the fellowship programs. He's really keen on spreading that education and
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connecting with other physicians everywhere. So that way when we do have a situation
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arise somewhere else. You know, I can always ask doctor Langer and doctor
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goldstate, Okay, this child is living in wherever, you know, say
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they're living in Portugal and we've got this email, come in and do you
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know anybody in that side of the world that can that you think would be
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great? And you know they'll fire back with you know, there's clinic,
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there's a doctor, there's this hospital where they do this program, and you
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know that information is invaluable to families absolutely. And you also have run plenty
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in the past symposiums, if I've said that correctly, and it's done plenty
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of them in the past sort of around North America and into Canada as well.
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How beneficial have they been? I think the symposiums are great. Where
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we struggle a little bit with because there's not a dense population anyone in place
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of Hirshbrug's kid or adults or families. Because the disease is somewhat rare,
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we don't have these humongous turnouts because you know, there just isn't that right.
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So sometimes we think, are we better online with our coffee and conversation
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webinars? Do we do the in person symposias, but the imperson's symposiums are
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great because a lot of families will travel into these cities, and so we've
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done them from Boston, in Houston, California, and Toronto, Winnipeg.
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We've gone all over North America, and families will travel in because they want
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that base to FaceTime with, you know, the experts and the physicians.
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They also want to meet other families. They also, you know, that's
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a big part of it. They want to be other families. They want
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their children to have that opportunity to meet another child that is going through the
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same thing, and so it is a really great community building event as well
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as information sharing. We yeah, we're very committed to stempasiums, but we
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want to reach as many people as possible. So we've also implemented our coffee
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and conversations that happened quarterly, and those I think have been because they live
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forever on the website too, information that you can access at any time fantastic.
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I think you're right about people wanting to meet other people with Earthsprung's because
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I know I've said before when growing up with Hirshprung's, I didn't know anybody
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else with hirshbrrongs. First time I knew anybody else was actually in my role
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in teaching when I met somebody with hirschprongs. But I was twenty five,
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so for the first twenty five years of my life, I didn't know didn't
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know anybody else with hirshbrun. So I think the symposiums and creating a community
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where people can meet other people with hirshbrong's, share stories, ask physicians,
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et cetera, et cetera, I think is fantastic. And I know we
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were talking a little bit off it about potentially branching out of Canada and the
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US. Did you have any particular places in mind that you were thinking we
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need to go there? Wow, Tom, we talked about it a lot.
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I feel like the UK would be a logical start for us and try
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to do again. And when we go to do these symposiums, we're also
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building relationships with the medical staff and doctors and facilities, and so then that
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becomes an open door for information sharing. Again, we do have quite a
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large outside of North America. For the largest following is in the UK,
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so we have a lot of engagement there and so to me, that has
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been. We've definitely touched about that, so I think that would be on
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our list for sure. I second that. I think that would be brilliant
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as well. And wherever it is, I'll do that. I'll guess we're
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dan on this Who's podcast alone. At the over half the listeners are UK
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based, and then twenty percent USA, twenty percent Canada, and then so
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less than one percent in every other country. So there is a large there
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is a large base here. And I think again with the UK being a
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lot smaller than the US and lots smaller than Canada, might possibly be easier
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for people to travel, gets to SYMPOSI. So so you might find again
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don't don't quote be on it, but you might sign that that you actually
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get more people even though we are a smaller country as such. Well sort
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and then there we go, we'll cover it, love it and all the
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void as well. Just finally, the future for Reach HD U s A
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and the future for Reach HD Canada. What do you think? I know,
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two slightly different, but what do you think? What do you think
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that looks like? Well, I it's funny because I know they are slightly
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different, but to me, there one that's how I operate. But I
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think our goals and objectives have always remained said fast and that we are committed
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to research because we know that research will improve the quality of life for those
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letter were first price disease. So research is you know, incredibly important to
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us. We understand that fundraising has to come backstoor and to pay for that
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research. So fundraise is all wave a huge component, and we want to
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raise more and more and more funds. So we're hoping more and more families
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sign up for the walks and you know, we have fundraisers that's quite simple
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to get involved in, and we hope that more families get involved in that
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aspect because those funds directly drive all of our fellowship programs and research programs will
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allow us to you know, do different projects and programs that benefit the community.
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And of course then the information share, you know, we want to
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branch out and be more global and make more of a network because again,
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as they said, we know the direct impact that has on the quality of
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like for children especially and families living with Hirsch funds, because that's usually when
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most of the complications happen. It's usually you know, fifteen in under is
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when things are a little bit more dicey, especially you know seven and eight
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in under And so you want to be able to have this big, beautiful
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global network of people and resources that will be able to help these families.
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Definitely, definitely, And I know I said finally, but this is the
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really free Oh where can people find you find find REHD? Well, we
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are. Our website is reach AHD dot org. I believe, I'm pretty
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sure it is, right, yeah, yeah yeah it is. Yeah,
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love written down it is, yes, yeah, yeah, yeah it is.
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And the emails are in the website. So when you email the foundation,
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you actually I get it. Our whole borget pretty much, so we
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all see the emails coming in. It'll go directly to one of my arm
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on our SAP, but then it comes to me or Eric pretty quick for
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doctor Goldstein or Langer whomever. So yeah, plastic and social media wise,
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social media wise, we are do you probably know more than I do.
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Tom. When are we on Facebook? Read right? Yeah? Your old
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Facebook? Yeah, we're reach AHD or read are is that what we are?
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Yes? You are? Yeah, You're also on Instagram also on Instagram
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under REHD right reach underscore HD. Yes, okay, see you do you
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can tell that we've does the panelis media that would be weird. So yeah,
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if you want to find more, please please do. Fantastic website,
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really good Instagram Facebook page as well, and we talked about episode one as
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well before we forget that the Facebook page pirsh Brown's community as well. Believe
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I don't think we've well, I don't think there's any more, is there.
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I don't think there is about me. Yeah, just for me.
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Thank you ever so much for your time, because we've spent over an hour
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are chatting and I know you are incredibly busy, as we said in part
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one, and thank you so so much for everything you do, everything the
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team does, and wish you the best of luck in the future. Thank
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you, Tom. I thoroughly enjoyed it and I hope to see you soon
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in the UK. Yeah, definitely, thank you so much. You.
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Thank you for listening to the podcast. Find us on Instagram Tom's Underscore Hirshbrung's
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