Latest / Tom's Hirschsprung's Podcast / Episode 62 - With REACH HD Co-Founder Isabelle Schnidag

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Episode 62 - With REACH HD Co-Founder Isabelle Schnidag · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode sixty two of Tom's Hirshprung's Podcast. A very special
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Speaker 1: guest joins me today. She is the leader and founder
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Speaker 1: of Reach HD, for which I am an ambassador for,
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Speaker 1: and we're going to talk about all things Reach, books
0:58
Speaker 1: and lots of other topics as well. So today I'm
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Speaker 1: joined by Isabelle Schnaddick. Welcome to the podcast as well.
1:04
Speaker 2: Thank you so much for having me.
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Speaker 1: Oh, thank you so so much for coming on. It's
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Speaker 1: an absolute pleasure, pleasure to meet you as well, because
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Speaker 1: we haven't this is the first time we'll be meeting
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Speaker 1: as well, which is fantastic, So thank you, thank you
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Speaker 1: so much for coming on. As we mentioned, I mentioned
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Speaker 1: a little bit in the intro. You are the founder
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Speaker 1: of Reach, the largest Hirshprongs charity in the world, and
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Speaker 1: I guess we're probably the best place to start. Will
1:33
Speaker 1: be from the top and how how Reach started, how
1:38
Speaker 1: it all came to be. Would you like to talk
1:40
Speaker 1: a little bit about that.
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Speaker 3: Yes, of course, so I'm the co founder because my
1:44
Speaker 3: husband and I we're the one who put our head
1:47
Speaker 3: together to be where we are today. The idea came
1:52
Speaker 3: as it's like a life experience because our son, we
1:56
Speaker 3: have four children, and our baby was born in two
2:00
Speaker 3: thousand and six. We knew halfhand that he was going
2:05
Speaker 3: to have Down syndrome, but after he was born, we
2:09
Speaker 3: had no idea that he was going to have hershborn
2:12
Speaker 3: and it was for us the first time ever we
2:16
Speaker 3: heard the name of that disease. And for the first
2:19
Speaker 3: five years of his life, to be honest with you,
2:22
Speaker 3: we were under the water. I felt totally alone, very isolated,
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Speaker 3: very heard and ununderstood, like non understood. It was really hard,
2:35
Speaker 3: and when we finally emerged from being underwater, we were
2:42
Speaker 3: thinking about not having a place for people to know
2:48
Speaker 3: and to be together and to avoid what we had
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Speaker 3: to go through alone. So we wanted to REACH to
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Speaker 3: basically create a community, and so it was about we
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Speaker 3: we before the creation of REACH, which was in two
3:03
Speaker 3: thousand and eleven, we had a lot of informal meetings with.
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Speaker 2: Our doctor who are now part of the board.
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Speaker 3: Friends that we supported REACH from day one and we
3:14
Speaker 3: were just brainstorming, having dinners talking about it, and finally
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Speaker 3: we did it.
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Speaker 2: We just started, we.
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Speaker 3: Filed for a on for profit and then which was
3:26
Speaker 3: created in twenty eleven, and it was really great. And
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Speaker 3: today I feel like it's it's becoming what we wanted
3:35
Speaker 3: and more because we have this platform that is international
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Speaker 3: and where we can actually help people see the disease
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Speaker 3: or what it is and then be involved in research
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Speaker 3: and the webinar and all kind of you know, talk
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Speaker 3: about it.
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Speaker 2: So that's that's where it is.
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Speaker 3: What I wanted to say also is I think from
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Speaker 3: day one we had three goal for each and it's
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Speaker 3: actually the in the acronym, so research, education and awareness,
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Speaker 3: awareness just we changed the world to advocacy recently, so
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Speaker 3: we are very very focused on those three goals.
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Speaker 2: And then we want to make this family bigger.
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Speaker 1: Absolutely, no, that's fantastic. And he said as well that
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Speaker 1: with reach starting twoenty and eleven, so it's been going
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Speaker 1: quite a while. Now, what would that be for fourteen
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Speaker 1: years if my master is correct, fourteen years? Kind of
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Speaker 1: within that time, you said you've seen it expand and change.
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Speaker 1: What are some of the biggest changes you've seen in
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Speaker 1: that time.
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Speaker 3: So first I would say we have more people on
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Speaker 3: the board. I mean, we have five people on board
5:02
Speaker 3: in the US, and we also have created an offshoot
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Speaker 3: of which in Canada and we have five there's five
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Speaker 3: people on board also in Canada.
5:11
Speaker 2: And then we have.
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Speaker 3: Created more recently, uh, this this ambassador program where people
5:18
Speaker 3: want to advocate for for the for the disease and
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Speaker 3: for for you.
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Speaker 2: Know, the education. And so this is usually.
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Speaker 3: People that are either have the disease or are mothers
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Speaker 3: of parents of someone who has the disease. And it's
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Speaker 3: a very very important world because there's no end to it.
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Speaker 3: It's like, uh, there's so many things we can do
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Speaker 3: about this, this job of ambassador.
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Speaker 2: We want to stand that.
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Speaker 3: And I said, we have ambassadors in the US, Canada, Australia,
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Speaker 3: in the UK. I actually would love to have a
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Speaker 3: ambassador in France.
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Speaker 2: Yes, because we are.
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Speaker 1: We'd love to We'll find somebody. If somebody is listening
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Speaker 1: to this podcast, it is listened to in France, that
6:08
Speaker 1: is one of the countries that has been listened to.
6:10
Speaker 1: So if there is somebody in France that does want
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Speaker 1: to get hold, we'll have contact details at the end.
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Speaker 1: But yes, but no, it sounds fantastic. And as I
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Speaker 1: mentioned as well quite a few times on my Instagram
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Speaker 1: and sometimes on here, I am one of your ambassadors.
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Speaker 1: I believe I'm the only one in not quite the
6:28
Speaker 1: only one in UK. I think there's too in the UK.
6:30
Speaker 1: I am one of your ambassadors, and I think, I mean,
6:34
Speaker 1: I take that role as all of our ambassadors and
6:36
Speaker 1: all of your board members take that role very seriously
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Speaker 1: to really raise awareness of hirshbrungs, because I think still,
6:46
Speaker 1: even though time has gone on and I think a
6:49
Speaker 1: lot more people have heard of it, I still come
6:51
Speaker 1: across medical professionals quite often, and I'm sure you do
6:54
Speaker 1: as well when you mention the word hirshprungs, they look
6:58
Speaker 1: at you with a blank stare and they're not not
7:01
Speaker 1: one hundred percent sure, and they go, what what? So
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Speaker 1: I think that that awareness and the sort of a
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Speaker 1: part of reach I think or had awareness and advocacy
7:14
Speaker 1: is just so so important, definitely.
7:17
Speaker 3: I mean, I recall a story where we were actually
7:21
Speaker 3: having a vacation in Arizona and then our son, of
7:24
Speaker 3: course it was little, he got sick and we had
7:29
Speaker 3: to end up at the hospital and at the hospital.
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Speaker 2: They didn't know.
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Speaker 3: Anything about the disease, and we basically had to beg
7:37
Speaker 3: them to give him an irrigation, help him with hydration,
7:43
Speaker 3: and basically knew we knew what was the deal for
7:47
Speaker 3: our son, but we had to walk through the doctor
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Speaker 3: there and and it was like amazing. At the same time,
7:57
Speaker 3: he was a little scary. Oh yes, yes, I'm just
8:02
Speaker 3: like you know, I'm just hoping that this thing don't
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Speaker 3: happen anymore.
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Speaker 1: Yeah, I think that's I know you mentioned the goals
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Speaker 1: at the start, but I think they've sort of all
8:16
Speaker 1: tie into the fact that, yes, the research, the education,
8:20
Speaker 1: and the advocacy is getting it to a point where
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Speaker 1: you don't want that sort of situation ever happening. And
8:27
Speaker 1: I've heard lots of situations from lots of parents very
8:31
Speaker 1: similar to that that you just don't want to ever
8:35
Speaker 1: happen to anybody in an ideal world. I know that
8:39
Speaker 1: we're a long way off from an ideal world, but
8:42
Speaker 1: in that ideal world, you would go to that doctor
8:46
Speaker 1: in whatever country, in whatever state, wherever in the world,
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Speaker 1: and they would know instantly, Oh, this is Hirshbrung's this
8:56
Speaker 1: is how we're going to treat it. And I guess
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Speaker 1: the more work that we do, the better chance we've
9:03
Speaker 1: got of succeeding.
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Speaker 2: I guess, yeah, definitely definitely stick.
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Speaker 1: As we didn't mention it at the beginning. But there
9:14
Speaker 1: was one one other part that I wanted to talk
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Speaker 1: to you about, and that is not only you co
9:21
Speaker 1: founder of Reach, you are also an author as well,
9:25
Speaker 1: and you have written a couple of books about Hirshbrungs
9:30
Speaker 1: Hirshbrung's disease more if I'm right in saying that, I've
9:35
Speaker 1: read a couple of them more sort of targeted at
9:40
Speaker 1: parents and families and siblings rather than being sort of
9:43
Speaker 1: an out and out medical book as such, so sort
9:47
Speaker 1: of very very family friendly orientated. So there's a couple
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Speaker 1: couple of books. My brother has Hirshbrungs and my brother
9:57
Speaker 1: is a trooper, and they are slightly different in terms
10:01
Speaker 1: of content. Would you like to talk a little bit
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Speaker 1: about those.
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Speaker 2: Of course. So the first one was that this one.
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Speaker 3: He was published in twenty twenty, and it's part of
10:14
Speaker 3: our effort to educate people about the disease. And the
10:23
Speaker 3: way we were thinking about it is like we wanted
10:26
Speaker 3: to target children because you know, sometimes I mean often
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Speaker 3: the child with hushbong is born in the family and
10:34
Speaker 3: has siblings, and it's a very hard disease to live
10:39
Speaker 3: through as a sibling. And so we wanted to help
10:44
Speaker 3: children in the family to understand what the disease means
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Speaker 3: and some of the hardship that you that they would
10:53
Speaker 3: have to go through, but also guide them. And then
10:56
Speaker 3: by doing this, it's also a way of helping the
11:00
Speaker 3: parents to talk about it and to make it like
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Speaker 3: less scary and more manageable. And then also sometimes we
11:11
Speaker 3: can laugh about it, because you know, it cannot just
11:15
Speaker 3: be too serious because too hard otherwise. And so the
11:19
Speaker 3: first book, it's so twenty twenty. My husband and I
11:26
Speaker 3: co authored the book. I did the illustration because I'm
11:28
Speaker 3: also an artist and I wanted to show that visually
11:34
Speaker 3: or in mans to be to be that little boy
11:37
Speaker 3: with the with the sickness. So we have a fictional
11:43
Speaker 3: character named Peter. Peter is the big brother, and then
11:47
Speaker 3: you have Henry, the little brother. And then Peter is
11:51
Speaker 3: telling the story of you know, meeting his little brother,
11:54
Speaker 3: seeing him at the hospital very sick, and then see
11:58
Speaker 3: him going going with his and to the dog.
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Speaker 2: I meant the doctor's.
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Speaker 3: Meetings and talking about you know, I mean basically explaining
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Speaker 3: what he heard and then wanted to just share it
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Speaker 3: with others, with another audience of kids. And so there
12:15
Speaker 3: is a lot of cute little anecdote about, you know,
12:19
Speaker 3: the way we actually lived through the disease. And there's
12:22
Speaker 3: like this page that is kind of cute. I mean,
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Speaker 3: I think it's funny. It's the page of the poopy dance,
12:31
Speaker 3: which which was it is true in our family. I mean,
12:35
Speaker 3: it was like take it something for granted, and not
12:39
Speaker 3: you don't take it for granted anymore.
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Speaker 2: And every time the child goes.
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Speaker 3: Poopy, it's like such a great joy of everyone, and
12:48
Speaker 3: it can be an.
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Speaker 2: Embarrassment for kids.
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Speaker 3: But but you know, as you you know, as you
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Speaker 3: make it like almost this family thing, it becomes like
12:58
Speaker 3: an inside joke or something something funny to look forward.
13:04
Speaker 2: And then there's a.
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Speaker 3: Lot of things that we tried to plug in the book,
13:07
Speaker 3: which was something that we you know, discover for ourselves
13:12
Speaker 3: as our child was getting bigger. The food allergy was
13:16
Speaker 3: something big for us, so we put it in the book.
13:21
Speaker 2: As part of the you know, the journey, and then
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Speaker 2: I think that was it.
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Speaker 3: That was it, and then yeah, I mean and and
13:31
Speaker 3: at one point we talked about the embarrassment of having gas.
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Speaker 3: You know, the child, the little baby, I mean, it's
13:40
Speaker 3: not a baby anymore. It's like a bigger and he
13:43
Speaker 3: goes with his brother to the movie theater and then suddenly,
13:46
Speaker 3: you know whatever, and it's like it's an embarrassment for
13:51
Speaker 3: the child for the bigger brother, but you know, it's
13:54
Speaker 3: part of the story. And and it's actually a book
13:58
Speaker 3: that is very helpful for also teachers at school because
14:03
Speaker 3: those things within in the context of a classroom where
14:09
Speaker 3: other children are not familiar with the disease. And then
14:12
Speaker 3: let's say the child has like some and continence or
14:17
Speaker 3: it has.
14:18
Speaker 2: Like some gas.
14:19
Speaker 3: It can be so embarrassing for the child, but it's
14:23
Speaker 3: also very good for the the other student to learn
14:28
Speaker 3: about it and to know what to.
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Speaker 2: Make of it.
14:30
Speaker 3: And instead of being like an embarrassment, they said, oh,
14:34
Speaker 3: you know, that's part of the illness. Let's support you
14:38
Speaker 3: know all pair. Yeah.
14:41
Speaker 2: So I think that's that's why the book is so important.
14:44
Speaker 3: It's so important for many in the parents the extended family.
14:51
Speaker 3: Also extended family had no idea for us personally, what
14:56
Speaker 3: was Hirshbrown they thought it was for a long they
15:00
Speaker 3: thought it was like a part of being having done syndrome.
15:04
Speaker 2: So not very not something very prevalent.
15:10
Speaker 3: I mean, it's still a rare disease, but you know,
15:12
Speaker 3: not something that would eventually concern concern them.
15:17
Speaker 2: Because they had typical kids.
15:19
Speaker 3: But it's not the case, you know, it's not a
15:21
Speaker 3: disease that this is necessarily have to have done syndrome too.
15:24
Speaker 2: In order to have hush Brown.
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Speaker 3: Yeah, so this was a very educational block for that absolutely. Yeah.
15:32
Speaker 2: The second book just came out, so it's available.
15:39
Speaker 3: Uh, and it's it's part of a bigger another project
15:44
Speaker 3: that we had to do, I mean that we just
15:46
Speaker 3: did with with our foundations. If you go on the website,
15:51
Speaker 3: you'll notice that there's a new section called DS plus
15:56
Speaker 3: HD or d HD plus d S, which is Done
16:00
Speaker 3: syndrome plus Hushbrown. And so we are targeting like a
16:06
Speaker 3: category of family who have a kid who have two
16:13
Speaker 3: complicated medical conditions. So we are starting with Down syndrome
16:19
Speaker 3: and Hushbrown. And it doesn't represent a big amount of people,
16:23
Speaker 3: I mean a large amount of people because it's only
16:27
Speaker 3: so let's say one every five thousand kids that are
16:33
Speaker 3: born at chiare have HD. One of every eight hundred
16:39
Speaker 3: kids that are born each year have Down syndrome in
16:42
Speaker 3: the US, at least in the US. So if you
16:46
Speaker 3: take the statistic of that, so you take the population
16:49
Speaker 3: of Down syndrome, it represents only three percent of that population.
16:54
Speaker 3: But if you take the population of hushbrown, it represents
16:57
Speaker 3: seven percent. So kids with hushbron have seven percent chance
17:01
Speaker 3: of having Down syndrome. So it's kind of significant, but
17:08
Speaker 3: at the same time it's not. Because it's not those
17:13
Speaker 3: families feel very, very alone, and they misunderstood, and that's
17:21
Speaker 3: why I created this book.
17:25
Speaker 2: So again it's a fictional story.
17:28
Speaker 3: And now the character Peter is the kids with Down
17:32
Speaker 3: and her dbrown and Lily is the big sister and
17:37
Speaker 3: she's five years old older than him, and then she
17:41
Speaker 3: I will show you some of the pages. So the parents,
17:49
Speaker 3: they are the mother is pregnant and they know the
17:54
Speaker 3: kids has done so they are reading about this is
17:57
Speaker 3: a well known book about Down syndrome. So they're reading
18:00
Speaker 3: about the condition and try to find out and prepare
18:03
Speaker 3: themselves for having a baby who is coming. And then
18:07
Speaker 3: the baby's born and then you know, and of course
18:11
Speaker 3: it's sick, and then it's getting all the medical like.
18:20
Speaker 2: How do you say that? Sorry, the medical.
18:25
Speaker 3: Investigation to see what's going on is not pooping. And
18:28
Speaker 3: then so they go back you find out that they
18:31
Speaker 3: have the diagnostic and they read about a herd one
18:35
Speaker 3: because they found out he has heard one. So it's
18:37
Speaker 3: a way of talking about the book. You're the books
18:40
Speaker 3: and then and then everything else flow. It's the story
18:44
Speaker 3: of it's a little bit of like just odd stories.
18:47
Speaker 3: At the same time, it's not on completely your stories
18:50
Speaker 3: because it's fictional.
18:52
Speaker 2: But what is the big.
18:57
Speaker 3: Point in the book is that when you have a
18:59
Speaker 3: child with Down syndrome who have a very hard time
19:05
Speaker 3: expressing himself or herself. Sometimes he's nonverbal, sometimes it's partially verbal,
19:14
Speaker 3: but it's not good to tell you about it is
19:17
Speaker 3: or her day, and it's not going to tell you
19:21
Speaker 3: about how it's feeling. You're going to have to do
19:24
Speaker 3: a lot of guessing. So having a kids with both conditions,
19:29
Speaker 3: it's very very hard because as parents you have to
19:33
Speaker 3: be so tuned too your kid. You have to kind
19:37
Speaker 3: of guess what is going on when the kids is
19:40
Speaker 3: not doing well. Is it Hushbrown related or is it
19:44
Speaker 3: something else? And if it's hushbrong related, you know, there
19:48
Speaker 3: is things you have to do, and it gets better
19:54
Speaker 3: over the years, but it's still not like you know hard,
19:58
Speaker 3: it's still hard. It's still not completely like like today.
20:04
Speaker 3: For example, Adrian, so it's it's all child. He's eighteen
20:09
Speaker 3: years old and he's rolling a nice school like this
20:12
Speaker 3: special at school, this special program. Everybody is very supportive
20:18
Speaker 3: of him. He just has like an amazing group of
20:21
Speaker 3: teachers and he has it's having a hard time to pup.
20:27
Speaker 3: So I sent him to school. I was not able
20:30
Speaker 3: to help him this morning because I've been alone for
20:33
Speaker 3: the weekend and.
20:34
Speaker 2: I'm just afraid that the school is going to.
20:36
Speaker 3: Call and said he needs you need to pick him
20:39
Speaker 3: up because his stomach is hurting too much.
20:42
Speaker 2: So it's something that is like.
20:45
Speaker 3: If he was typical, maybe he would say, Mom, you know,
20:49
Speaker 3: maybe I need to do something about it, or I
20:51
Speaker 3: can't do something about it. But because he's not typical,
20:54
Speaker 3: I'm the one who has to do stuff, and usually
20:57
Speaker 3: with my husband.
20:59
Speaker 2: So that's the challenge.
21:00
Speaker 3: And I'm hoping that this book not only will target
21:04
Speaker 3: that little population, but also another group of people, which
21:10
Speaker 3: are people with kids with special needs who have also
21:12
Speaker 3: another significant medical condition.
21:16
Speaker 2: Who can relate to that.
21:20
Speaker 3: And there's like a letter at the end of the
21:22
Speaker 3: book about two addressed to the caregiver and giving them
21:27
Speaker 3: some of my.
21:30
Speaker 2: Advice.
21:32
Speaker 1: That's fantastic. I think that's brilliant because one thing I
21:37
Speaker 1: have seen. I've interviewed three, three four authors now and
21:43
Speaker 1: they all do something similar, but they all do something
21:47
Speaker 1: a little bit different. There's some books that are targeted
21:51
Speaker 1: at parents, sort of saying your child has this condition,
21:56
Speaker 1: and you know this may be some of the things
21:59
Speaker 1: that happen within their life. There's some conditions targeted. There's
22:04
Speaker 1: one interview I did well yesterday which would have come
22:07
Speaker 1: out a couple of weeks ago, where this was targeted
22:12
Speaker 1: towards the child to explain to other children how their
22:18
Speaker 1: Hirschbrungs affects them. And then that's where I really quite
22:22
Speaker 1: like your book because it's then almost the other way round.
22:26
Speaker 1: It's targeted towards the sibling to understand their brother or
22:34
Speaker 1: sister or whoever their condition. And I love the fact
22:39
Speaker 1: that you've taken something and sort of turned it into
22:43
Speaker 1: a slightly different angle. And I haven't I haven't seen
22:46
Speaker 1: any other books that have done that that way, So
22:50
Speaker 1: I really I really love that that sort of that
22:54
Speaker 1: way of looking at it, and I think that's fantastic.
22:58
Speaker 1: And when you mentioned as well well about the struggle
23:02
Speaker 1: to communicate, I think is something that's so important that
23:07
Speaker 1: I having interviewed people on here with children who have
23:11
Speaker 1: or mothers with children who have both Down syndrome and Hirshprungs,
23:17
Speaker 1: they have said to me, whether it be on the
23:18
Speaker 1: podcast or offer very similar things, that their children are
23:22
Speaker 1: either fully nonverbal or just struggle to communicate. And that's
23:29
Speaker 1: where as you said with the Reach website, I think
23:33
Speaker 1: the ds HD, the Down syndrome and Hirshprung's disease part
23:39
Speaker 1: is so so important. And I've had messages in the
23:41
Speaker 1: past from people who've said, you know, where can I
23:44
Speaker 1: find more support? That they tend to sort of message
23:47
Speaker 1: me on Instagram or Facebook or whatever, and have said,
23:50
Speaker 1: my child has Hirshprungs and then Down syndrome, and where
23:53
Speaker 1: can I I'm more support? And the first place I
23:56
Speaker 1: send them is the Reach website because I think that
24:00
Speaker 1: portion of the website is it's it's not really wordy,
24:06
Speaker 1: but it gets to the point which is what the
24:09
Speaker 1: best websites do. They just get to the point there,
24:12
Speaker 1: this happened, this happened. This is maybe some strategies to
24:16
Speaker 1: help with that as well. So I think I think
24:18
Speaker 1: all of those are fantastic. And I think as well,
24:25
Speaker 1: in terms of both of those books, the second one,
24:30
Speaker 1: has that been released yet or is that going to belief?
24:34
Speaker 3: It is released, and actually you can you can get it.
24:38
Speaker 3: You can go on the website and go on the
24:40
Speaker 3: button set donate and you'll see there's different things you
24:44
Speaker 3: can get and you can get those books.
24:46
Speaker 2: And it gives you options.
24:48
Speaker 3: You can get it at Amazon, you can get it Noble,
24:51
Speaker 3: but you also get it from the publisher itself. Usually
24:54
Speaker 3: it's less expensive directly from the publisher.
24:58
Speaker 2: There's like this little link.
25:02
Speaker 3: And if there's any problem, you let me know, because
25:05
Speaker 3: I think we may, we may, we may create our
25:07
Speaker 3: own little store.
25:08
Speaker 1: To Really it's fantastic excellence. So if anybody, if anybody's
25:14
Speaker 1: looking for those books, they are, they are fantastic, they are,
25:17
Speaker 1: they are ready and available. Something else I wanted to mention,
25:23
Speaker 1: if I get back a little bit to the board
25:26
Speaker 1: and the ambassadors, he said, you have five in the US,
25:31
Speaker 1: five in Canada and half a dozen but only just
25:35
Speaker 1: over a half a dozen ambassadors. Did you ever when
25:41
Speaker 1: when you started this in twenty eleven, fourteen years ago,
25:45
Speaker 1: did you ever envisage it being this big that you're
25:49
Speaker 1: you're sort of got was about sixteen seventeen people, whether
25:54
Speaker 1: they be ambassadors or on the board involved with the organization.
26:01
Speaker 2: I mean, yes and no.
26:03
Speaker 3: First of all, I want to correct coming because I
26:05
Speaker 3: said five number a five board member in the US,
26:07
Speaker 3: but we're actually seven o seven board number and five
26:11
Speaker 3: in Canada. So yes, I know because when we first
26:17
Speaker 3: started this foundation, I was actually part of a support
26:22
Speaker 3: group that was based in England, and I was asking
26:26
Speaker 3: the guy who was leading the support group if he
26:30
Speaker 3: would be part of it so make it some kind
26:33
Speaker 3: of international right away, and he was very defensive.
26:38
Speaker 2: He didn't want anything else to be.
26:42
Speaker 3: He was thinking about I think the support would be
26:44
Speaker 3: in his baby, and he didn't want anything else to
26:47
Speaker 3: be competing with that, thinking that maybe we were going
26:52
Speaker 3: to steal some people away from from the from the
26:57
Speaker 3: the focus anyway. So so it started in the US
27:02
Speaker 3: and then in Canada because Liz was involved with us
27:05
Speaker 3: right away. And yes, we wanted to be international right away,
27:13
Speaker 3: but becoming big like that that fast. I mean, it's great,
27:20
Speaker 3: and I just hope that we are bigger in a
27:23
Speaker 3: year or two from now, especially with the Ambassador.
27:27
Speaker 2: Program having more and more and more.
27:29
Speaker 3: People representing the disease and the foundation and all the
27:35
Speaker 3: research that has been doing and and and granted, and
27:40
Speaker 3: the fellowship training and in all the things we're doing. Yeah.
27:44
Speaker 1: Absolutely, And and you mentioned that Liz doing with the
27:50
Speaker 1: Canada side, had Liz on or many many months ago
27:55
Speaker 1: to come and talk a little bit about reach and
27:57
Speaker 1: what she does as well. And that everybody on the
28:00
Speaker 1: board has a different role as well, which is another
28:04
Speaker 1: thing I like that that nobody's just on the board
28:07
Speaker 1: to be on the board. They're all on the board.
28:10
Speaker 1: And whether it's it's Nicole who does some fundraising, whether
28:13
Speaker 1: it's Lizzie does a lot of the the marketing, everybody
28:18
Speaker 1: is there and working towards the same goal, which is
28:23
Speaker 1: something I love. And everybody has everybody has their own
28:30
Speaker 1: speciality as well. In terms of board members, did all
28:33
Speaker 1: of the board members come to you or to say
28:37
Speaker 1: they want to be part of the board, or did
28:39
Speaker 1: you go out and pick people specifically, or was it
28:42
Speaker 1: a mixture.
28:44
Speaker 3: I think first, when we started the foundation, we had
28:48
Speaker 3: people that were involved with us from the creation of
28:51
Speaker 3: the of the foundation and that became board members.
28:56
Speaker 2: And as we grew, some of.
28:59
Speaker 3: The people are not normal girl on the board and
29:01
Speaker 3: other people are there and we are trying to proactively
29:07
Speaker 3: ask if we still want to be part of the
29:11
Speaker 3: of the board, you know, because it's like it's a
29:14
Speaker 3: probono position and a lot of us are very busy
29:20
Speaker 3: with like other like your full careers.
29:24
Speaker 2: And we have doctors on board, we have a yeah,
29:28
Speaker 2: so we have all of us and I forgot what
29:32
Speaker 2: is the question you have?
29:34
Speaker 1: So in terms of board members, did do the board
29:38
Speaker 1: members if you wanted to be part of the board,
29:40
Speaker 1: did they all come to you? Or did you go
29:42
Speaker 1: out and seek people like Alan Goldstein who's a doctor
29:46
Speaker 1: on the board, Did you go out and seek here?
29:48
Speaker 1: What did he come to you?
29:49
Speaker 3: I think it's more like you come to us and
29:52
Speaker 3: then and decide that, you know, we all want someone
29:57
Speaker 3: on a new person on the board.
29:59
Speaker 2: Second, like a decision like.
30:01
Speaker 1: That, like that excellent, excellent. I think what what everyone
30:06
Speaker 1: does there is fast fascinating. And if anybody, if anybody
30:11
Speaker 1: hasn't seen the work that is done by the REACH Board.
30:14
Speaker 1: There's there's plenty on the website. I mean, you you
30:18
Speaker 1: it's not just sort of raising awareness in sort of
30:21
Speaker 1: research education, but you do give out grants as well.
30:25
Speaker 1: You've given out hundreds of thousands of pounds to people
30:29
Speaker 1: in who are researching Hirschbrung's disease as well, which I
30:35
Speaker 1: think is absolutely fascinating. And how long rough has that been?
30:39
Speaker 1: Sort of about five years or so that's been going
30:41
Speaker 1: on or is it a little bit longer?
30:43
Speaker 2: So twelve it's going to be the twelve grants, So
30:45
Speaker 2: twelve years of that as well.
30:47
Speaker 1: I got that wrong, So.
30:49
Speaker 3: Yeah, and so we are it's part of you know,
30:52
Speaker 3: the omission of the research research side of REACH. So
30:56
Speaker 3: we are going to be funding our twelve grant and
31:00
Speaker 3: we realize that each year we get more demand, so
31:03
Speaker 3: we have there's more, you know, more research that needs
31:07
Speaker 3: to be done. Just it would be great if you
31:09
Speaker 3: can inform two grand a year at one point, and
31:14
Speaker 3: that's you know, one.
31:15
Speaker 2: Of the goals.
31:17
Speaker 3: You're the thing that we are funding is a fellow program.
31:20
Speaker 3: So it's been going on for I think it's two years.
31:24
Speaker 3: Well I'm not sure exactly, and we would like to
31:29
Speaker 3: to have maybe two fellowship I mean to two fellow
31:33
Speaker 3: that are trained each year.
31:36
Speaker 1: That would be brilliant. Well, I guess the more the
31:38
Speaker 1: more people that are trained, the more research is done,
31:41
Speaker 1: the more advocacy, the more awareness that's out there. And
31:44
Speaker 1: I guess it just all spirals and spirals and spirals upwards,
31:48
Speaker 1: which would be amazing. So it's just I guess more
31:51
Speaker 1: and more and more. I guess it's sort of one
31:54
Speaker 1: of the plans.
31:55
Speaker 3: Yes, yes, and the training people you know, to do
31:59
Speaker 3: the practice in this for the surgeries and taking care
32:04
Speaker 3: of the honest it's a wonderful program.
32:08
Speaker 1: Absolutely, yes, No, I definitely definitely. Second, that's it's a fantastic,
32:14
Speaker 1: fantastic program. And if we speak as well, I guess
32:17
Speaker 1: that leads quite nicely on to plans for the future
32:23
Speaker 1: for Reach. As you said, it's been the charity itself's
32:29
Speaker 1: been going fourteen years, the research program has been going
32:34
Speaker 1: twelve years. In terms of the future of Reach, I'm
32:41
Speaker 1: not asking for sort of helping out specifics, but in
32:45
Speaker 1: terms of the next few years, and you've just obviously
32:50
Speaker 1: launched the ambassador program over the last six months, or so,
32:55
Speaker 1: which has been something that's very new been added, that's
32:57
Speaker 1: been added in Where do you see the the charity
33:02
Speaker 1: going in which direction over the next few months, years
33:06
Speaker 1: or so?
33:08
Speaker 3: So I think I think so the research we talk
33:11
Speaker 3: about it more research, hopefully more more grant for research,
33:17
Speaker 3: more training for fellows in terms of education, because that's
33:23
Speaker 3: the you know, the second mission of which trying to
33:27
Speaker 3: target right now, you know what we feel like we
33:30
Speaker 3: are targeting the family and care givers of of hits.
33:37
Speaker 3: What'smag phonk. We would like to be able to target
33:42
Speaker 3: also more of the doctors, the healthcare professional. Uh, it
33:49
Speaker 3: would be great if you know, we could have hospitals
33:54
Speaker 3: or doctor practices just getting books or with out to
34:00
Speaker 3: us for for more like advertisement or education for their
34:05
Speaker 3: own patients. And then the general public. This is where
34:09
Speaker 3: we have to keep growing because I think we are
34:14
Speaker 3: not I mean we are known, better known, but not
34:18
Speaker 3: known enough among the general public. There's still, you know,
34:22
Speaker 3: people that don't know anything about harsh Port and so
34:27
Speaker 3: we'd like to focus on that, make it like.
34:31
Speaker 2: Well known.
34:32
Speaker 3: And then because the more people know about it, the
34:37
Speaker 3: better we are in terms of feeling like we have support,
34:41
Speaker 3: we have.
34:44
Speaker 2: We get you know, we're not alone.
34:48
Speaker 3: We are not like we're growing our community and that's
34:52
Speaker 3: the goal.
34:53
Speaker 2: That's the good.
34:54
Speaker 3: And the third pole of the of the mission is
34:56
Speaker 3: the advocacy. And I think what you said about the
34:58
Speaker 3: ambassador is to tell you right, Uh, it's it's like
35:02
Speaker 3: new and but it's growing and it's wonderful. But there
35:06
Speaker 3: is no limit to it, you know you advocacy, it's
35:11
Speaker 3: something we do every day as parents, as caregiver, as teacher.
35:17
Speaker 3: So so I don't know, there's it's just expanding and
35:25
Speaker 3: and the other thing. Ouh, there's an important part that
35:28
Speaker 3: I almost forget. Without we from day one we had donors,
35:35
Speaker 3: amazing group of donors and some people are every year,
35:40
Speaker 3: I mean regular donors, other people are new donors.
35:44
Speaker 2: Without them, I don't think we have been able to
35:47
Speaker 2: go to be where we are today. And so this
35:50
Speaker 2: is an effort that we still have to do.
35:54
Speaker 3: We have to make We have to have projects where
35:56
Speaker 3: we fund raise money where we we we have like
36:01
Speaker 3: amazing people and a ticket of that, but we need
36:03
Speaker 3: more of that, more of those projects where we collect
36:08
Speaker 3: money to fund those programs.
36:12
Speaker 1: Absolutely absolutely, and I think as well, when the reach
36:18
Speaker 1: no pun intended to try and get further worldwide. I
36:24
Speaker 1: think is so so important because again, when I speak
36:28
Speaker 1: to a lot of people within this country, unless they've
36:32
Speaker 1: sort of come across either you or me or somebody
36:35
Speaker 1: else from the from the organization, they maybe haven't come
36:40
Speaker 1: across REACH or heard of REACH. And I remember speaking
36:45
Speaker 1: to my parents about REACH when when I first heard
36:47
Speaker 1: about you, and they said, you know, this would have
36:49
Speaker 1: been great for something, you know, thirty years ago when
36:52
Speaker 1: I was born, and I constantly think about them and
36:56
Speaker 1: put myself in their shoes in saying, you know, obviously
37:01
Speaker 1: thirty years ago is a long time ago, and we
37:05
Speaker 1: had things like the Internet and Instagram and Facebook, and
37:07
Speaker 1: all of that stuff weren't around. Well, the Internet was,
37:10
Speaker 1: but Instagram and Facebook no. And I just think that
37:14
Speaker 1: if we can raise more awareness and just really letting
37:18
Speaker 1: people that know that they're not alone, I think is
37:21
Speaker 1: something I know you said this right at the very
37:24
Speaker 1: beginning of the interview about feeling underwater, which I think
37:28
Speaker 1: is a fantastic way of explaining how this can sometimes feel.
37:33
Speaker 1: When I speak to parents all the time who have
37:37
Speaker 1: children with hirshprungs and or children with just conditions that
37:40
Speaker 1: nobody's really come across before or heard of before, and
37:44
Speaker 1: you can feel a little bit swimming against the tide
37:47
Speaker 1: and a little bit underwater, and a bit like what
37:50
Speaker 1: do I do now? And having well, what is a
37:56
Speaker 1: whole sort of nearly twenty person strong charity out there,
38:02
Speaker 1: all of which are whether it be you know, whether
38:08
Speaker 1: it be through fundraising or financially helping, or whether it
38:12
Speaker 1: just be somebody there who is there to support you
38:17
Speaker 1: and guide you, or just be someone who is there
38:20
Speaker 1: to listen, who knows more than most, maybe not exactly,
38:25
Speaker 1: but certainly more than most what you're going through. Because,
38:28
Speaker 1: as you said, you know so many people on the board,
38:32
Speaker 1: well ambassadors and people on the board are either parents
38:37
Speaker 1: of children who have hirshbrungs or people like me and
38:42
Speaker 1: Steph who have hirshbrungs ourselves will know a little bit
38:48
Speaker 1: more of what people were going through. So I just
38:51
Speaker 1: think all of that is so so important. And a
38:56
Speaker 1: lot of countries, well i'd say a lot of countries.
38:58
Speaker 1: Most countries won't have a hirshbrun specific charity. I know
39:05
Speaker 1: we had one in this country before, called Champs, but
39:09
Speaker 1: it's not it's not running anymore. So in this country,
39:14
Speaker 1: we don't from as far as I'm aware, we don't
39:16
Speaker 1: have anything specific to do with Hirshbruns. So having reached
39:21
Speaker 1: there and going worldwide or certainly more sort of into
39:27
Speaker 1: other countries is absolutely fantastic and it is something that yeah,
39:32
Speaker 1: I mean definitely, I'm very much on board, and I'm
39:35
Speaker 1: sure all of our ambassadors and board members are as well.
39:41
Speaker 1: But I think, yeah, so in terms of the future,
39:44
Speaker 1: is very much looking, yeah, looking to expand looking to
39:49
Speaker 1: do more, which I think would be would be fantastic.
39:51
Speaker 1: And I know you mentioned about the website as well
39:55
Speaker 1: and about social media, and obviously we all know that
39:58
Speaker 1: that's really really important and getting the message out there
40:01
Speaker 1: in terms of where people can find information on reach
40:07
Speaker 1: and any of the resources for example the down syndrome
40:11
Speaker 1: and Hirshprung's page that you've got there as well, where
40:13
Speaker 1: can people find a lot of those resources.
40:20
Speaker 3: Also in a website primarily, and then they can also
40:26
Speaker 3: send us some questions we have like this, I think
40:35
Speaker 3: it's I don't remember, sorry, we have like mailbox that
40:47
Speaker 3: you can send pictures and then we are very responsive
40:50
Speaker 3: to that. And also the other thing is we have
40:56
Speaker 3: ongoing newsletters that comes out every four months that has
41:03
Speaker 3: like very informative ADEC dots or like we have a
41:09
Speaker 3: theme each time. We have like we're going to have
41:12
Speaker 3: a kids corner, Like a kid name is Benjamin, who
41:17
Speaker 3: is the son of one of our ambassador and board
41:21
Speaker 3: member who is going to be talking about Rushbone in
41:27
Speaker 3: that newsletter.
41:29
Speaker 2: We have.
41:31
Speaker 3: Coffee and conversation from time to time where we invite
41:36
Speaker 3: special guests. We have webinars, symposium so all the all
41:43
Speaker 3: kinds of stuff we have in terms of information. Absolutely,
41:48
Speaker 3: so we are just very like ongoing.
41:53
Speaker 1: Brilliant and if people want to find that, website www
41:58
Speaker 1: dot reach h dot org is where to find all
42:03
Speaker 1: of that information. And as you said, this quarterly newsletter,
42:06
Speaker 1: which is which is brilliant. And you mentioned about Benjamin
42:10
Speaker 1: coming up soon. He has been on the podcast. He's
42:13
Speaker 1: one of the youngest guests he's ever been on the podcast.
42:16
Speaker 1: So he him and his mom Nicole have been on
42:19
Speaker 1: as well. And his story is for anybody who hasn't
42:22
Speaker 1: heard that, he is fascinating and he is very willing
42:27
Speaker 1: to talk about his story as well, which I find
42:30
Speaker 1: is just amazing. Yes, and there's lots of lots of
42:34
Speaker 1: things on that website as well, and especially to sign
42:38
Speaker 1: up for the newsletter as well. Just popular email address
42:41
Speaker 1: into that into the quarterly newsletter and then you can, Yes,
42:47
Speaker 1: you'll get an excellent resource once every I think he
42:50
Speaker 1: said four months in every four months.
42:54
Speaker 2: Yes, that's right.
42:55
Speaker 3: And I wanted to say something about so we have
43:00
Speaker 3: so ambassadors, Like we have a new ambassador, the mother
43:05
Speaker 3: of Milo, who also has Down syndrome and Hush brown
43:10
Speaker 3: and she and I created this subcategory you know, on
43:15
Speaker 3: our website HT plus the DS. She is the ambassador
43:22
Speaker 3: of that population. So she's I think she she gave
43:26
Speaker 3: her own email address, so whoever would like to have
43:31
Speaker 3: more information can contact her directly. Of course you also
43:35
Speaker 3: can contact me because I also have a child, Uh
43:38
Speaker 3: is older than than Maro Maroo I think is only six.
43:43
Speaker 2: So you are we are willing to, you.
43:45
Speaker 3: Know, to help out people. I think this foundation has
43:52
Speaker 3: become a family, a community, and that's that's that's why
43:59
Speaker 3: it's so powerful because sometimes you need I mean, you
44:05
Speaker 3: need the collective in order to to heal or to
44:10
Speaker 3: get over hardship.
44:13
Speaker 1: Absolutely, and then.
44:14
Speaker 3: It's so important to feel like you have that access
44:18
Speaker 3: to and the one of the point that I also
44:22
Speaker 3: wanted to say is that my husband and I we
44:25
Speaker 3: live in Conquered Massachusett.
44:28
Speaker 2: We are not close to family.
44:30
Speaker 3: We are actually on our own and ever since we
44:33
Speaker 3: had children, we always had to hire help. We never
44:38
Speaker 3: were able to have our parents' help because they don't
44:41
Speaker 3: live they never live very close to us. But some
44:45
Speaker 3: people are not as fortunate and they cannot really afford
44:49
Speaker 3: because help is very expensive. And I think this idea
44:52
Speaker 3: of having a community, having people that you know have
44:56
Speaker 3: the same artship and can you can be rich, you
44:59
Speaker 3: can reach the they can reach you and have a
45:02
Speaker 3: special bond and sharing the same stories, can be also
45:07
Speaker 3: aware to get help and to feel like you're not alone.
45:13
Speaker 1: Absolutely absolutely, I think that's a wonderful, wonderful sentiment to
45:16
Speaker 1: finish on. I just wanted to say thank you so
45:19
Speaker 1: so much to you, to Eric, to the entire board
45:24
Speaker 1: and the ambassadors as well, who do a fantastic job
45:28
Speaker 1: and everything that you do in Hirshprungs, which want to say,
45:30
Speaker 1: thank you so much, and also thank you for joining
45:33
Speaker 1: me here today.
45:34
Speaker 2: Thank you so much, thank you very much. Here is
45:36
Speaker 2: a pleasure.
45:40
Speaker 1: Thank you for listening to the podcast. Find US on Instagram,
45:43
Speaker 1: Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes on
45:48
Speaker 1: Spotify by searching Tom's Hirshbrung's podcasts.