Latest / Tom's Hirschsprung's Podcast / SPECIAL ANNOUNCEMENT!!

Transcript

SPECIAL ANNOUNCEMENT!! · Tom's Hirschsprung's Podcast

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  Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
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  Speaker 1: Each episode, we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
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  Speaker 1: tuning in. Hello, and welcome to a special episode of
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  Speaker 1: Tom's Hirshbruns Podcast where I am joined by two special guests.
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  Speaker 1: I am joined by Ben and Georgina. Welcome both of
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  Speaker 1: you to the podcast. We are here not through a
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  Speaker 1: hirshbrog story this week or today, but we are here
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  Speaker 1: with a special announcement and I will hand over to
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  Speaker 1: you Ben for that special announcement. Okay, thanks Tom, thanks
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  Speaker 1: for having me on.
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  Speaker 2: I'd just like to start by saying that I think
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  Speaker 2: this podcast is a fantastic resource for the hirshparng disease community,
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  Speaker 2: so I feel very privileged to have been invited.
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  Speaker 1: My name is Ben.
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  Speaker 2: I'm a research scientist working at UCL Great Ormond Street
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  Speaker 2: Institute of Childhealth. This is a fantastic research facility partner
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  Speaker 2: with Great Ormond Street Hospital that sort of bolted onto
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  Speaker 2: the side of Great Ormond Street Hospital, and that partnership
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  Speaker 2: makes it Europe's largest center for children's health research. So
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  Speaker 2: that's where I work. I'll tell you how this announcement
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  Speaker 2: came about. We work on the development of stem cell
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  Speaker 2: therapies for Hirshprong disease, and in twenty twenty four we
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  Speaker 2: published a piece of work which we were really proud of.
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  Speaker 2: You guys will know better than me that the majority
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  Speaker 2: of children with Hershwung disease will need surgery in the
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  Speaker 2: first year of their life. We approached the families of
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  Speaker 2: the children their scheduled to have surgery and we ask
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  Speaker 2: for permission to use a small amount of the tissue
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  Speaker 2: that's being removed. If we get consent, then we transplant
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  Speaker 2: small bits of the tissue with our stem cell therapy,
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  Speaker 2: and after three weeks we were able to see that
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  Speaker 2: we had significantly improved the ability of those bits of
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  Speaker 2: tissue to squeeze and relax, and that was the first
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  Speaker 2: time ANYONN has shown improvement mediated by stem cell therapy
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  Speaker 2: in human tissue. So we were really excited about it,
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  Speaker 2: and that seemed to us a really great point to
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  Speaker 2: try and engage with the community to make sure we're
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  Speaker 2: working on the bits of the disease that they want
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  Speaker 2: us to work on and that they support what we're doing.
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  Speaker 2: So we reached out to four families from across the
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  Speaker 2: UK and them to participate in a focus group. We
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  Speaker 2: met up with them five times digitally over the course
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  Speaker 2: of the year and we covered a whole range of topics.
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  Speaker 2: We spoke about the latest research we're doing in the lab,
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  Speaker 2: the research we'd like to do in the future. We
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  Speaker 2: even briefly discussed what the first in child clinical trials
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  Speaker 2: might look like. I'll distress that we're still, unfortunately many
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  Speaker 2: years away from a clinical trial, but it's good to
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  Speaker 2: have the views of the community baked in at this
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  Speaker 2: early stage, so that when we get to that point,
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  Speaker 2: we already know what their opinions are. We had originally
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  Speaker 2: planned to have three digital meetings and then a fourth
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  Speaker 2: in person meeting, and then we realized quite quickly that
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  Speaker 2: having deliberately invited people from all over the UK, it
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  Speaker 2: will be quite unreasonable to expect them to come all
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  Speaker 2: the way down to London.
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  Speaker 1: For an hour or two.
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  Speaker 2: And that's where the idea of having a larger Hirshmung
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  Speaker 2: Disease Awareness date came from and we spoke with the
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  Speaker 2: focus group about this in a sort of unplanned fifth meeting,
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  Speaker 2: and we spoke about sort of what they'd like that
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  Speaker 2: day to include, what they'd hoped to get out of it,
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  Speaker 2: and that has massively shaped the agenda. So we're going
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  Speaker 2: to hear from surgeons, gastreentrologists, and researchers that work on
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  Speaker 2: hirshmung disease. We're hoping to make this day as useful
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  Speaker 2: as possible for the hirshmung disease community, so there will
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  Speaker 2: be talks on ento colitis, talks on stomas. Then we
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  Speaker 2: talked on how to navigate the early years. And I'm
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  Speaker 2: really excited about hosting this awareness state because myself and
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  Speaker 2: my colleagues really enjoyed all of the focus group meetings before.
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  Speaker 2: Before we had the first meeting, I'd gone online. I've
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  Speaker 2: been reading up guides on how to run focus groups,
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  Speaker 2: and they were filled with these horror stories of this
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  Speaker 2: is what to do if a member is, you know,
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  Speaker 2: very aggressive, or doesn't that anyone else talk, or if
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  Speaker 2: no one's engaged, And that wasn't what we found at all.
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  Speaker 2: All the families that we invited were really keen to
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  Speaker 2: take part. They were lovely, they were engaged, and they
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  Speaker 2: gave us so much information that we wouldn't have had
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  Speaker 2: otherwise and so much to think about. So we are
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  Speaker 2: really looking forward to hosting this Hairshprong Disease Awareness State
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  Speaker 2: to continue engaging with the community, and we're hoping to
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  Speaker 2: make it as possible an experience as we can. So
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  Speaker 2: there's gonna be lots of opportunities to network with the
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  Speaker 2: other families and to hear from members of the Hirshprong
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  Speaker 2: disease community.
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  Speaker 1: Fantastic. Yes, So a Hirschbrung's Disease Awareness Date certainly the
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  Speaker 1: second one I think I've been part of. I've just
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  Speaker 1: had one I think last February. So this one will
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  Speaker 1: be well coming up this summer, so fourth of July
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  Speaker 1: at UCL correct.
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  Speaker 2: Yeah, this will be fourth of July from nine am
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  Speaker 2: to four forty five at the UCO of Great Ormond
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  Speaker 2: Street Institute of Child Health.
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  Speaker 1: That's in London. Fantastic, So again a lot closer for
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  Speaker 1: those who wanted a London based one if it was
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  Speaker 1: a bit too far for the Liverpool. If you're a
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  Speaker 1: bit further south. Like I am, this obviously is ideal
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  Speaker 1: for you. And alongside having nurses and doctors and dietitians
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  Speaker 1: and psychologists, we've also got two speeches from parents within
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  Speaker 1: the Hirshbrons community, and I am very glad to be
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  Speaker 1: joined by one of those special guests in Georgina. Now,
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  Speaker 1: am I right in saying that you'll be talking mainly
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  Speaker 1: through the early years? Is that correct? Yeah?
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  Speaker 3: Absolutely, I'm going to talk about our experience my son Freddy.
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  Speaker 3: I've appeared on this podcast a couple of times, but
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  Speaker 3: my son Freddy has Hirshbron's sea's. He has total chronic
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  Speaker 3: hirshbrongs CEA's and he's now with this stoma, having had
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  Speaker 3: all of his colon removed except a very small portion,
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  Speaker 3: and I want to be talking through what that experience
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  Speaker 3: is like for us. I know many of my fellow
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  Speaker 3: parents new to Hirshbrongs disease as a diagnosis, will probably
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  Speaker 3: identify with lots of the stuff that I'm going to
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  Speaker 3: chat about. But I'm also going to chat a little
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  Speaker 3: bit about setting up Hirshbrings Disease UK, which is an
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  Speaker 3: organization that supports and we're we're you know, new this year,
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  Speaker 3: which is really exciting. But our aim is to be
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  Speaker 3: able to support those affected by Hirshbrings disease through a
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  Speaker 3: multitude of support, so whether that's the information on our website,
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  Speaker 3: whether it's parents support or peer support, if you're if
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  Speaker 3: you have Hirshbrongs disease through through many different ages and groups,
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  Speaker 3: but also in supporting healthcare practitioners to understand Hirshbrongs disease
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  Speaker 3: on a deeper level so they get that sort of
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  Speaker 3: lived experience involvement in the work that they do. So
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  Speaker 3: we're talking a little bit about that as well and
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  Speaker 3: where that's come from. And we recently applied with charity
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  Speaker 3: status which we're waiting for. We have some fundraising going on,
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  Speaker 3: but I'm really excited to see how that develops. I'm
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  Speaker 3: going to chat a little bit about Freddie and our experience,
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  Speaker 3: but I'm going to have to be there to speak
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  Speaker 3: to families as well, who are you experiencing what we've
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  Speaker 3: experienced or even in different ways as well, and chat
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  Speaker 3: with them about you know, how many wor words to
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  Speaker 3: support them and what's what they want.
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  Speaker 1: Fantastic I'm really looking forward to I know as you said,
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  Speaker 1: you've come on the podcast a couple of times and
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  Speaker 1: we chatted through Freddie's story. But I'll be really really
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  Speaker 1: I'm really looking forward to your presentation so that everybody
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  Speaker 1: can get a chance to see and hear freddie story.
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  Speaker 1: I think will be fantastic. And the other speaker, it's
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  Speaker 1: not with us today, but is Hannah Davis, who has
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  Speaker 1: a son with Hirschprungs. Again, she's been on my podcast
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  Speaker 1: a couple of times. You can see where some of
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  Speaker 1: these guests speakers have come from. I've been doing some recruiting.
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  Speaker 1: But yes, so she'll be coming as well. So you
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  Speaker 1: have two guest speakers to well, two very different stories,
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  Speaker 1: both Hirshbrungs, but two very different stories which will be fantastic.
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  Speaker 1: And again this as well as being very informative for
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  Speaker 1: adults and parents, whether you're an adult like me with
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  Speaker 1: Hirshbrungs or a parent like Georgina with a child with Hirshbrungs,
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  Speaker 1: children are also very much welcome to come last time
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  Speaker 1: and this time as with the older Hey, so I
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  Speaker 1: guess it's there to mention as well, Ben that it
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  Speaker 1: is most definitely open to everyone. Correct.
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  Speaker 2: Yeah, absolutely, We've got room for around eighty people. We've
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  Speaker 2: secured a baby feeding room, which we're hoping we can
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  Speaker 2: also multi purposes a baby changing facility. So yes, all ages,
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  Speaker 2: all types of first Prong disease absolutely welcome. We look
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  Speaker 2: forward to seeing.
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  Speaker 1: Me there absolutely and as you said, eighty eighty places available.
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  Speaker 1: I think when certainly when people talk about Hirshprong's Day
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  Speaker 1: who maybe don't know so much about, you know, the
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  Speaker 1: ins and the outs of the Hirshprong's community, it may
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  Speaker 1: seem eighty people is is a lot. But I think
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  Speaker 1: we're all in agreement that I think the the want
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  Speaker 1: and need for this is going to be huge. So
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  Speaker 1: what I would do when you know, those tickets do
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  Speaker 1: come out around first of May is don't wait, because
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  Speaker 1: I think I think there will be a lot of
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  Speaker 1: people bearing your mind again messages I had after the
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  Speaker 1: older hay Day where people said, oh I really wish
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  Speaker 1: I knew and I missed out and this that the other.
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  Speaker 1: So yes, don't wait. But also, as you said, Ben,
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  Speaker 1: you know this is sort of a trial, trial run
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  Speaker 1: kind of and obviously looking to do things in the future,
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  Speaker 1: which is absolutely amazing. But I'm right in saying this
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  Speaker 1: is more of a sort of see how it goes
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  Speaker 1: type thing to begin with.
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  Speaker 2: Very much we're hoping so, I mean, so we've also
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  Speaker 2: invited Rachel Harwood, who was part of the team organizing
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  Speaker 2: the alder Hey event, to speak at this event about
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  Speaker 2: the research that her team are doing first Rong disease
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  Speaker 2: and the engagement that Rachel Harwood got with the hush
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  Speaker 2: frong disease when as they I think that was last year,
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  Speaker 2: wasn't it, Yes, last February.
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  Speaker 1: I think, yeah, a year ago.
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  Speaker 2: So that was fantastic, And I mean, we'd really hope
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  Speaker 2: moving forward into the future if we can secure funding
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  Speaker 2: to be able to sort of maybe alternate years hosting
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  Speaker 2: it in all the hay and hosting it down in
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  Speaker 2: the South so that it makes it easier for people
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  Speaker 2: to get to and engage.
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  Speaker 1: So yeah, if people are able.
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  Speaker 2: To attend and they feel their like to give us feedback,
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  Speaker 2: that would be great, so that we can push that
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  Speaker 2: forward and try and make each subsequent event if we
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  Speaker 2: are able to hold them even better.
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  Speaker 1: Amazing, amazing, And just on the agenda itself, I've never
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  Speaker 1: talked about as guest speakers, but there's all all kinds
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  Speaker 1: of different talks about different topics. I mean it's it's
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  Speaker 1: a smagers board of of really entertaining and really interesting topics.
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  Speaker 1: I mean entricolitis, you've got psychological, you've got diet, you've
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  Speaker 1: got navigating early years, transitioning from pediatric to adults. So
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  Speaker 1: I think whatever stage you're at, whatever whatever type of
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  Speaker 1: Hirschbrungs you have as well. So this isn't just limited
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  Speaker 1: to one type. This is whatever type you have, whatever
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  Speaker 1: stage you're at, I think there will most certainly be
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  Speaker 1: something for everyone. And just as we wrap up, I
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  Speaker 1: just just one thing from from both of you. I
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  Speaker 1: guess one thing that you are possibly excited for or
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  Speaker 1: really looking forward to for the day. So we'll go
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  Speaker 1: ladies first, Georgina, what are you looking forward to?
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  Speaker 2: Thank Tom.
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  Speaker 3: I think I'm just really excited to be with other people.
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  Speaker 3: I think that's something that a lot of families feel.
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  Speaker 3: It's quite lonely, quite isolated. You know, it might be
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  Speaker 3: quite a while or a distance away that you might
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  Speaker 3: find people who've got a diagnosis of Hirshbun's disease. And
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  Speaker 3: then also they're at different stages, and so I think
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  Speaker 3: it could be really hard to connect with people. So
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  Speaker 3: I think, one, I'm really excited about that, but also
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  Speaker 3: really excited to have sort of the investment from you guys,
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  Speaker 3: Ben and the interest and care that goes into this
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  Speaker 3: kind of thing for families because again, I think it's
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  Speaker 3: a lonely experience. I think it can feel pretty difficult
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  Speaker 3: navigating and you have to become an expert in a
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  Speaker 3: condition you've just never heard of before. And I think
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  Speaker 3: the fact that we're able to work together this with
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  Speaker 3: you know, multi partners from healthcare teams across the UK,
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  Speaker 3: but also with doing loads of outreach with with other
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  Speaker 3: groups like TOM and also myself, I think it just
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  Speaker 3: pays the way for a deeper level of support for people,
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  Speaker 3: which I think is just grossly needed. And I think
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  Speaker 3: that that's really going to be an exciting step for
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  Speaker 3: us as a community as we move through the next
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  Speaker 3: couple of years that there's going to be support in place,
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  Speaker 3: whatever that looks at, where that stays in person, where
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  Speaker 3: that's more connections, so that I'm just really excited about it.
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  Speaker 2: I can't wait.
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  Speaker 1: Same absolutely, I'll echoed that one hundred percent and same
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  Speaker 1: question to you. But I think that was a great answer.
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  Speaker 2: Share I'm really looking forward to engaging with the community.
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  Speaker 2: I look forward to all of the meetings with the
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  Speaker 2: focus group. They gave such fantastic insights. We've opened up
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  Speaker 2: new research avenues based on what they've said, So the
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  Speaker 2: community giving feedback really does shape what we do in
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  Speaker 2: the future. I mean, in particular, there there's another researcher
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  Speaker 2: who we've invited to speak at the event, Professor Katie Harron,
• 15:13
  Speaker 2: who is a brilliant statistician we've been working with and
• 15:18
  Speaker 2: she's been using anonymous data to track how many times
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  Speaker 2: an individual has to attend hospital in the years after
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  Speaker 2: their surgery for heirshprangzies. There's completely anonymous, there's no identifying
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  Speaker 2: information like names, birthdays, or where they're from. But what
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  Speaker 2: she can see is how often sort of individual X
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  Speaker 2: has attended hospital and what the general category of their
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  Speaker 2: complaint was, and Katie can them pair that with the
• 15:44
  Speaker 2: educational outcomes to build up the average journey a child
• 15:48
  Speaker 2: with hirshmarngzis will experience. I think that's a really valuable
• 15:51
  Speaker 2: resource for parents have newly diagnosed children. The focus group
• 15:56
  Speaker 2: also placed quite a lot of emphasis in a lot
• 15:58
  Speaker 2: of the meetings on the role of diet in day
• 16:04
  Speaker 2: to day life. So they requested that when we had
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  Speaker 2: this day, there'd be a talk from someone who's able
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  Speaker 2: to offer dietetic support.
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  Speaker 1: So we've got Hannah Day. Who are we talking.
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  Speaker 2: About the role of diet, Which I'm really excited about,
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  Speaker 2: I hope, I suppose.
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  Speaker 1: I'm just most excited.
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  Speaker 2: About making a really positive day filled with lots of
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  Speaker 2: information that will be valuable for the community, and hearing
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  Speaker 2: what the community has to say.
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  Speaker 1: About the work we do. Excellent, excellent, Well, this has
• 16:34
  Speaker 1: been brilliant. I'm really glad that we've got we now
• 16:36
  Speaker 1: announce it and now everybody knows, and I'm just I'm
• 16:40
  Speaker 1: really looking forward to well meeting both of you, but
• 16:43
  Speaker 1: beating everybody and sharing those Hirshbrung's experiences. So it's going
• 16:48
  Speaker 1: to be it's going to be a fantastic day. So yes,
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  Speaker 1: we're looking forward to fourth of July at UCL. Tickets
• 16:54
  Speaker 1: will be available by the first of May, and the
• 16:57
  Speaker 1: link for those tickets will be in the description below
• 17:01
  Speaker 1: because the website is very long, so I've got to
• 17:05
  Speaker 1: copy and paste. But guys, thank you so so much
• 17:09
  Speaker 1: for doing this, for being part of the announcement and
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  Speaker 1: I will see you both on the fourth of July.
• 17:15
  Speaker 1: Thank you very much, Tom, you there, Thank you for
• 17:21
  Speaker 1: listening and being part of this growing community. If you
• 17:24
  Speaker 1: have enjoyed the episode, don't forget to subscribe, leave a review,
• 17:28
  Speaker 1: and share it with someone who might need it. You
• 17:31
  Speaker 1: can connect with us on social media via Instagram, Facebook,
• 17:34
  Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast. See you
• 17:39
  Speaker 1: next week, Yeah,