In this week’s episode, Josh is talking to Jillian and Peter Critchley. Jillian was a Finalist in the 2019 Community Achievement Awards for NSW/ACT.
Jillian Critchley has made significant impact on the lives of disabled youth. Both her daughters and husband Peter have Charcot Marie Tooth disease (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body.
Jill has been a committee member of the CMT Association of Australia for 10 years, is the founder of the Charcot Marie Tooth Aussie Kids Program and designed the CMTAK Mentor Program.
Jill helps organise annual conferences where medical and health professionals and people with CMT from rural and regional areas can discuss treatment and support. She was an NSW/ACT finalist in the Australian Family Early Education and Care Awards 2017, Early Childhood Educator of the Year category.
In this episode:
- Jillian spoke candidly about their choice to have a family, knowing that CMT is a hereditary disease and could be passed on to their children
- We got to understand why the Kids Program and the Camps are so important to young people with CMT
- We hear about Jillian’s philosophy to not “cotton wool” kids with a disability
Links
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If you would like to help or know more, email to cmtaussiekids@gmail.com
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Transcript
[00:00:04] Josh
Welcome to the inspirational australian’s podcast where we chat to people making a difference in their communities and in the lives of others
[00:00:12] Jillian
And here’s your host today. Josh Griffin.
[00:00:20] Annette
Thank you, Annette that Well for this week’s dose of inspiration,
[00:00:23] Speaker 1
,
[00:00:23] Josh
I’m talking to not one inspirational Australian but to be joined by Jillian Jillian Peter Critchley and are very excited to speak with them. And Jillian Jillian a finalist in 2019 as part of the New South Wales Community Achievement Awards. Jillian Jillian a finalist in the Transgrid leadership award, and Jillian Jillian Peter have both been involved in Volunteering and community service for over thirty five years. And have had a real dedication in working with children suffering from Charcot-Marie-Tooth disease over the last 10 years, especially in to find out a bit more about Murray. Truth what that’s about and to hear about the Volunteering and leadership efforts of Jillian. That’s right. Guys straight away this morning. Welcome. How are you doing?
[00:01:06] Jillian
Well, thank you. Morning, Josh.
[00:01:08] Josh
So you’re joining us from South Sydney into week three hundred and twenty two of lockdown. Is it over there?
[00:01:16] Jillian
Yeah,
[00:01:16] Jillian
we stopped counting at about ten. I think so. Yeah that’s OK. We’ll get out eventually.
[00:01:22] Josh
So my first question to everybody is you referenced that as CMT Chacko Murray. Tooth disease. Tell us what that is because I had not heard of it before reading a bit about your story.
[00:01:34] Peter
So even though it’s
[00:01:37] Peter
in the
[00:01:39] Peter
book, nothing to do, it’s actually what’s called a peripheral neuropathy. So
[00:01:45] Peter
in short, it’s a gene malfunction
[00:01:49] Peter
on our DNA that causes our nerves to deteriorate over time.
[00:01:56] Peter
And the changes in the nerves in the nerve functioning then affects muscular performance
[00:02:03] Peter
that results in weakness
[00:02:05] Peter
and deformities,
[00:02:07] Peter
and impacts on the
[00:02:09] Peter
daily living of people with CMT.
[00:02:14] Peter
That’s generally expressed an inability to do some sports. Some people the very worst affected are in wheelchairs, sensations,
[00:02:24] Peter
either absent or
[00:02:27] Peter
delayed. So the reactions of seante people are about one and a
[00:02:31] Peter
half times slower than the nerve reactions of people. And obviously people that means, you know, you can
[00:02:40] Peter
touch something that’s burning hot and take a longer time to react to the fact that
[00:02:45] Peter
that is actually burning.
[00:02:47] Peter
And that results in an injury. But more commonly, it’s that disability,
[00:02:54] Peter
that inability to play sport deformities
[00:02:58] Peter
and those in, in, in society
[00:03:01] Peter
result, particularly for kids in in bullying and social ostracism. Ostracization. Yeah.
[00:03:08] Josh
So with the nerves and, you know, Tomate, sports effects, feet and hands the most stuff.
[00:03:14] Peter
That’s yeah, that’s, that’s the peripheral part of the neuropathy. It’s mainly our hands our feet and, and our legs that are impacted. So I’ve never been able to play any sport whatsoever. I can’t
[00:03:29] Peter
run more than about a couple of meters. And when I tell you my legs go out
[00:03:33] Peter
and generally result intripping.
[00:03:35] Josh
Oh no,
[00:03:37] Peter
not good.
[00:03:37] Peter
Yeah, so Auris or as my daughter likes to put it Constantly testing gravity.
[00:03:43] Josh
That is a much more eloquent way of saying it, isn’t it? So paida you suffer from saying to yourself, how did that manifest as a child for you or later in life?
[00:03:54] Peter
No, it manifested from childhood. I am sorry,CMT
[00:03:59] Peter
mostly
[00:03:59] Peter
is an inherited disease. There are
[00:04:03] Peter
several hundred differenttypes
[00:04:05] Peter
of CMT for the purists.
[00:04:07] Peter
I inherited a tribe called one I inherited that of my mother. I’ve always known about it. Some people get diagnosed later in life because it’s inherited naturally. You’ve always got it. I’ve always been aware of it. I’ve been involved with, with research into the disease since some since about all I can remember.
[00:04:33] Josh
Yeah. And so thing is I’d never heard of it Well from there’s a lot of different types of symptoms, something that’s misdiagnosed or not known about
[00:04:41] Peter
a lot of Them. Yeah. Constantly so growing up I always considered, you know I thought we were the only family with it. I had it, my brother has it, my sister missed out or didn’t get it. And I’ve got cousins with it, my aunt several of my aunties, and none of my uncles had it.
[00:04:59] Peter
So we, we always felt we’re the only ones with the disease. It was so rare.
[00:05:04] Peter
But growing up and as people get diagnosed then it we get to know more people with it.
[00:05:13] Peter
Often it’s mistaken for anything from epilepsy or multiple sclerosis or MDR.
[00:05:21] Peter
There’s a whole pile of stuff that it’s misdiagnosed as well.
[00:05:26] Peter
It is the most common that, that little statistic is the most common peripheral neuropathy, you know, across the world
[00:05:33] Jillian
is
[00:05:34] Peter
one in two and a half thousand or one in three thousand people with Santé,
[00:05:38] Peter
and whether it’s been diagnosed correctly or not. But there the stats at the moment, so even though it’s considered rare, it is the most common peripheral neuropathy.
[00:05:48] Josh
So Jillian, obviously you met Peter and have come to the relationship with that same thing you learned about it. Was your understanding with Peter having knowing so much about it? Did you always know that it was something that kind of developed as you knew each other longer?
[00:06:07] Jillian
OK, so we will out together. We knew each other for six months beforehand, we were involved
[00:06:12] Peter
in the scouting and guiding
[00:06:14] Peter
show on the stage the Game Show. And so we’ve been, we’ve
[00:06:17] Jillian
been friends for six months. And after those six months, he asked me out on a date,
[00:06:22] Peter
and on that first date,
[00:06:24] Jillian
he told me about his disability.
[00:06:26] Jillian
And I actually said to him,
[00:06:28] Peter
what disability.
[00:06:29] Jillian
Yeah, and he explained it to me and was very open
[00:06:33] Peter
and even to the point, I think even on that night, even though that was 30 years ago,
[00:06:37] Jillian
he
[00:06:37] Peter
said it is, it is genetically inherited. And that there was the potential for him
[00:06:43] Peter
to be able to pass that gene down to any of the children that he had.
[00:06:46] Jillian
So I was always very aware of that. I, as I’m sure we’ll
[00:06:50] Peter
discuss later on an early childhood teacher.
[00:06:53] Jillian
So I’ve
[00:06:54] Peter
worked with a lot of children with disabilities, have an understanding of, you know, inclusion with with children. So I suppose it didn’t really intimidate me much. And if anything it just tweaked my curiosity.
[00:07:06] Jillian
Peter’s mom had been involved
[00:07:08] Peter
as has described with his brother as well in a lot
[00:07:11] Jillian
of research. So there was plenty of information for me
[00:07:14] Jillian
when I did first start looking and going
[00:07:16] Peter
OK, what is this samiti? Obviously when we were first going out, it wasn’t so important that as things got a bit more serious and
[00:07:24] Jillian
we sort of realised that we were going to end up together. That it, it, it
[00:07:30] Peter
was good to have those honest conversations about that.
[00:07:34] Jillian
You know, even just talking to geneticists later on down the line once we
[00:07:37] Peter
were married and understanding the implications of passing the gene on.
[00:07:42] Jillian
And yeah, that was good for us to do, but I’ve always
[00:07:45] Peter
got honesty from Peter and I suppose therefore Ben wanted to always be involved in advocacy and awareness for people with Santé. Yeah,
[00:07:55] Josh
I guess tell me if this is too hard of a question but when you were having those talks about genetics and having your own children, were you ever in the opposite camp of Oh, maybe we shouldn’t have children?
[00:08:11] Jillian
I would, I would be the one that would answer that we actually did a
[00:08:14] Jillian
program millions of years ago on catalyst’s
[00:08:17] Jillian
about justice and also on insight.
[00:08:20] Jillian
And
[00:08:20] Peter
the question is asked if you knew you had any genetically inherited condition,
[00:08:25] Jillian
would you be happy to pass it on?
[00:08:26] Peter
Happy is not the word we’re looking for.
[00:08:29] Jillian
But an awareness of it is important,
[00:08:31] Peter
but I have always stated and I believe that it would be the same.
[00:08:36] Peter
We chose not to test once we had once we were pregnant.
[00:08:40] Jillian
We could have tested
[00:08:41] Peter
and it would have come back to the result.
[00:08:43] Peter
But it would have been around 20 weeks gestational by which stage we wouldn’t have
[00:08:49] Peter
terminated the condition the pregnancy.
[00:08:52] Jillian
So I suppose what I’m saying is we knew what we were InfoSpace.
[00:08:56] Peter
We would never wish it on your child. But I do also feel in
[00:09:01] Jillian
our family I believe our stronger
[00:09:05] Peter
and our daughters have adult daughters who
[00:09:07] Peter
who have it,
[00:09:09] Jillian
are
[00:09:10] Peter
better advocates for themselves and stronger for themselves because
[00:09:13] Jillian
they have the disability.
[00:09:15] Peter
And it’s making Them much more aware of the needs of the whole community rather than being quite insular, I suppose.
[00:09:22] Jillian
So it said no there was never
[00:09:24] Peter
a view that we wouldn’t have children but we wanted to come in with our eyes open
[00:09:28] Peter
and, and be aware of the expectations of what was ahead.
[00:09:33] Josh
Well, my personal view is that every life is beautiful and important. And should be celebrated and, you know, it sounds like you were very well educated, considered, had thought through all the consequences or anything like that. And that’s just a really responsible thing to do.
[00:09:50] Peter
We came out of the genetic, sorry to
[00:09:52] Jillian
interrupt. We came out of the geneticists appointment
[00:09:55] Peter
before we were having children, but once we came out of the appointment, and basically the geneticist at Sydney, children’s Hospital said,
[00:10:02] Peter
you know more than we will ever know about 70 insist
[00:10:08] Jillian
you are
[00:10:09] Peter
in the best position to make the decision about whether you choose to have children or not. So
[00:10:14] Jillian
I felt like that was our best tick of approval that we were going to do it. And
[00:10:19] Peter
you know, I always check now because I spend so much time Volunteering for
[00:10:22] Peter
the santae AustraliaAssociation.
[00:10:25] Peter
I do wonder what I would do if I wasn’t doing that. So
[00:10:29] Peter
it’s certain that my life was meaningful and I feel like I can make a difference to people with Santé even without having a
[00:10:38] Josh
well speaking of making a difference for people with a with CMT. So Jillian and I like to hear more about CMT or the kids program. Can you tell us how it started and what it is? So
[00:10:52] Peter
it’s still mentioned CMT. Australia is an organisation that was established to support people with CMT. And a lot of the time it was focused on raising awareness
[00:11:04] Peter
raising research funds, etc.
[00:11:07] Peter
back in 2011. Joe and I identified an opportunity for
[00:11:13] Peter
doing better with kids with you know, it’s,
[00:11:17] Peter
it’s very isolating at
[00:11:19] Peter
times and particularly for kids in regional and remote areas. It can be very isolating for kids who have a disability like CMT, and don’t know anybody else with it. And how they do that. Know where we’re reading an article from
[00:11:36] Peter
the CMT organisation in the
[00:11:38] Peter
United Kingdom. And there was a Lovely lady who had been running camps over there. Her name was Karen,
[00:11:45] Peter
is Karen
[00:11:46] Peter
and Karen.
[00:11:47] Peter
We reached out to Karen and had a discussion
[00:11:50] Peter
with her
[00:11:51] Peter
to think about it. Stop planning,
[00:11:54] Peter
what we could do for kids and, and what what is involved in running an annual camp for kids so that they can meet their peers. And so that they can
[00:12:05] Peter
experience the challenges of life
[00:12:07] Peter
in terms of activities in a safe way. And when I’m inside,
[00:12:11] Peter
it’s with their peers. You know,
[00:12:13] Peter
if you think about a disabled person going on a scout camp or a school camp
[00:12:20] Peter
and being asked to do some adventurous activities, I can’t,
[00:12:24] Peter
more isolating if they’re doing it with their peers who also have Santé and they can see one that they, that they’ve got support and that they can support others with the same condition then that’s enormously liberating. So that’s sort of the philosophy behind
[00:12:40] Peter
why we established CMT Aussie kids
[00:12:43] Peter
and why we run these annual kids.
[00:12:47] Josh
Yeah, something I hadn’t really considered before because it’s a disability from the sounds of it. You know, I’m just learning about it now, but that is perhaps not prohibitive for someone going on to camp. But as you said, or most of the activities they probably can’t participate in and that would be really isolating. And as you said at the start that leads to bullying. And that’s exactly. It’s a,
[00:13:10] Peter
it’s a funny position because we’re not sort of in that if you walked past me straight and unless you’re going to be very closely, you
[00:13:18] Peter
may not think that I have a disability at all. Then you put me in a competitive situation or if I need to climb something, then it comes becomes really obvious that I have a disability. And the same for kids, you know, if they’re suffering fatigue and they’re suffering pain and they and they can’t climb the to wait to climb or to hit a bed or to kick a ball and run a full game of soccer, then that’s very isolating for Them. You know, kids that are bullying Them, you know, it sort of piles up and up. So if we can provide that even once a year camp for these kids
[00:13:57] Peter
to give Them that little bit of self-respect and that understanding that they’re not alone in this,
[00:14:03] Peter
this journey that they’re on. As some people don’t like to use the word journey but you know, they,
[00:14:10] Peter
they’re not aligned in life and we’ve set up social media
[00:14:16] Peter
That
[00:14:17] Peter
they can keep in
[00:14:18] Peter
contact with Them with Them, with each other between the camps.
[00:14:23] Peter
And that’s
[00:14:23] Peter
the end. That’s the whole, the whole philosophy what we do and why we do it.
[00:14:28] Peter
And it’s been very good for the kids and we in twenty sixteen we took
[00:14:32] Peter
and so we had five kids from the UK visit us plus a couple of the adult helpers that they come and join your
[00:14:40] Peter
camp. I joined our camp and we did spent two weeks together touring around Sydney and then two years later we took
[00:14:47] Peter
11 kids over to the UK camp in Cumbria. As part of that, we spent about two weeks two to three weeks traveling from London up through Edinburgh. So thought and that was right with the, you know, more than just the kids who went on the Cape. It galvanized the whole community, the whole CMT community. We had people in
[00:15:16] Peter
CMT, people in
[00:15:18] Peter
deniliquin who raised thousands and thousands of dollars to help us getaway.
[00:15:24] Josh
Anomalies like this for the end. But this is such a beautiful story. And you know, I can just imagine how uplifting this would have been for the people involved. If people did want to support these camps and help fundraise, so more people can, can get access. How can they do that?
[00:15:38] Peter
So the easiest way to do it is to just get on to our CMT Australia website, which is W dot CMT dot org
[00:15:47] Jillian
So I, you and there will be a donate button there.
[00:15:52] Jillian
And this week,
[00:15:53] Peter
because we’re trying to sort of Constantly do different fundraisers for different things. There is a fundraiser. We go through the kids now platform
[00:16:01] Peter
that is there for the Santé kids.
[00:16:03] Peter
Alternatively just email us at
[00:16:06] Peter
CMT Aussie kids at Gmail dot com. So that’s Aussie as in,
[00:16:11] Jillian
I hate
[00:16:13] Peter
to say many the kids that’s us.
[00:16:17] Jillian
But yeah that’s probably the best way forward
[00:16:20] Peter
to be able to donate to support some kids because we have kids across Australia in New Zealand attending camp as well.
[00:16:28] Josh
Cool. So many questions, this is really, really exciting stuff. So what ages are the kids normally that would go on the campus?
[00:16:34] Jillian
So we started off when we were foolish and young. We thought we were going to offer it to every, every school aged child from five to 18 and then
[00:16:42] Peter
the early childhood teacher in May
[00:16:44] Peter
kicked in. And we know
[00:16:47] Jillian
we sort of
[00:16:47] Peter
generally offer it for anything from eight, nine 10 year olds just depending on their maturity
[00:16:53] Jillian
if we had had an end and the number of 18. But now what we have is a group of kids who have been potentially going to camp for 10 years because this is our tenth year
[00:17:05] Peter
who are now like our older daughter twenty three. Well,
[00:17:08] Jillian
just because you suddenly turn 18 doesn’t
[00:17:10] Peter
mean that you No longer require support
[00:17:13] Peter
or, you know, kids contact. So we’ve created a mentor
[00:17:18] Jillian
program within the larger CMT Aussie kids program that
[00:17:24] Peter
sort of gives these kids a little bit of leadership experience. Trying to give back a little bit to the Aussie kids program, I suppose to future proof it as well. So that we could say that
[00:17:34] Peter
there could be a number of kids that are involved in the mentor, the
[00:17:37] Jillian
mentor program,
[00:17:39] Peter
where they can start to,
[00:17:40] Jillian
to take out some of the roles that Peter and I are doing as the older adults within the group. So,
[00:17:46] Peter
you know, that’s,
[00:17:47] Peter
that’s sort of part of the plan of the age.
[00:17:51] Peter
But it really, and this is actually then refers to something else, which
[00:17:54] Jillian
I would like to touch
[00:17:56] Peter
a lot of the success of the CMT Aussie kids program.
[00:18:01] Jillian
People say to us, Oh wow
[00:18:02] Peter
you’re so inspirational, Peter, and JillianJillianyou’re doing such a great job.
[00:18:06] Jillian
A lot of it is thanks to the families and the parents
[00:18:11] Peter
who have trusted their kids with us. We wouldn’t have a camp
[00:18:15] Peter
without parents who aren’t yet. OK, I mean we do have a story of a child
[00:18:19] Jillian
who is now a young woman is one of our mentors,
[00:18:22] Jillian
but
[00:18:23] Jillian
lives in in country New South Wales. And she has some tape when she first contacted us. She was about 13 or 14.
[00:18:31] Peter
She said have been about the camp. I’d really like to go.
[00:18:34] Peter
But mum and
[00:18:34] Peter
dad aren’t really keen because I don’t know anybody
[00:18:37] Jillian
yet. We were like, well, duh,
[00:18:39] Peter
yeah, I bet he knows anybody
[00:18:41] Jillian
was like, I mean you’ve got to sort of baylock about that.
[00:18:44] Peter
She said, look I’ll talk
[00:18:45] Peter
to my dad because he’ll be the one I’ve got to get over. OK, that’s
[00:18:50] Peter
not not no. What’s the answer? And eventually she convinced that, and she said, Oh look, if I get dad to call you can can, you can talk to him. I said, of course, and that’s a lot of my role
[00:19:00] Peter
within the group
[00:19:01] Jillian
is to talk to parents because
[00:19:05] Jillian
now might sound quite controversial. Here, but some,
[00:19:09] Peter
not all, some parents of kids with a disability
[00:19:13] Jillian
tend to cotton balls. Them. They wrapped Them up in cotton wool.
[00:19:16] Jillian
They can’t get hurt. They can’t do anything. They’ve got this disability.
[00:19:21] Jillian
So we’re just going to later loss of nothing because we’re worried about being injured or we’re worried about not being able to achieve that. That flies in the face of Sam, tales of kids philosophy. So I do talk to our families about that.
[00:19:35] Peter
So anyway this story I spoke to this dad,
[00:19:37] Jillian
I had a long conversation with dad. He asked all sorts of questions. I answered Them honestly. And he got off the phone and the young girl rang me straight away back again. And she said, what did you say?
[00:19:50] Jillian
I said why? She said dad’s crying.
[00:19:54] Peter
And I thought, Oh no, got it wrong
[00:19:56] Jillian
thing. Now what about what if I said that’s really upsetting.
[00:20:00] Jillian
But she said, it’s a good cry because I’m coming to camp dad, let me go. So I suppose a lot of our
[00:20:06] Peter
advocacy for our kids
[00:20:09] Jillian
is helping our families understand. And I
[00:20:11] Peter
suppose we’ve got a little bit of cred because we do have two daughters with it.
[00:20:14] Jillian
And that
[00:20:15] Jillian
increases as the years go by I suppose. But
[00:20:18] Jillian
it’s helping our families understand how they can best support theirchild
[00:20:24] Jillian
to, to accept their sanity,
[00:20:27] Peter
to be able to find strategies to deal with their sanity
[00:20:30] Jillian
and to have a full and meaningful life
[00:20:33] Peter
with the same type.
[00:20:34] Peter
And that’s really, that’s one of our main, that’s what I feel
[00:20:38] Peter
really strongly about within the group.
[00:20:41] Josh
That’s a beautiful story. JillianJillian thank you for sharing and speaking of cred I mean there’s some serious between you two paida. Obviously you’ve lived experience JillianJillian Your background in early childhood education and I know the two of you have you said at the top scouting experience, camping and working with kids and leadership all rolled into this know camp initiative that you Guys are doing. It’s just makes so much sense and it sounds like a really beautiful thing.
[00:21:11] Peter
There is no cure for CMT. So we’ve got to make sure that
[00:21:15] Peter
from, from day one that the kids are prepared for life. And we, and we get a lot of our inspiration from the kids, and they are a great bunch of kids. And despite the fact that they face this difficulty, they just
[00:21:33] Peter
on on camp they support each other and
[00:21:36] Peter
in between camps they support each other.
[00:21:39] Peter
And you know, that’s just so inspirational for, for us as much as you know,
[00:21:46] Peter
us Providing Them with an opportunity. So
[00:21:50] Peter
it’s an enormously satisfying thing to do. And for us, you know, like you alluded to it’s bringing together our life experience, whether it’s child’s
[00:22:02] Peter
early education experience,
[00:22:05] Peter
our combined scouting experience
[00:22:07] Peter
and my experience with the disability. So we hope that we were making a difference to the kids
[00:22:14] Peter
and, and that’s where we get our satisfaction from.
[00:22:18] Josh
One question I like to ask towards the very end. And again, this is a podcast of bringing the stuff forward, but sometimes I ask, you know, who, who inspires you? And I think you’ve just just told us that you’re inspired by the kids that you’re actually, you’re there to support and, and help.
[00:22:35] Peter
Yeah, look, they’re a beautiful bunch of kids
[00:22:37] Peter
and we’re Constantly on the lookout for
[00:22:41] Peter
other kids to join the camp so that
[00:22:44] Peter
hopefully we can give Them the same experience.
[00:22:48] Peter
Same in terms of inspiration, that’s really, that’s really what it is. It’s, it’s, we do it for the kids and we get a lot
[00:22:56] Peter
back from the kids
[00:22:57] Peter
when we do it.
[00:22:59] Peter
Our Good friend in, in the UK
[00:23:02] Peter
is an inspirational woman as well. She has CMT
[00:23:06] Peter
and we just had the most amazing friendship with her and through that the CMT kids in the UK and the CMT Aussie kids have the most amazing
[00:23:17] Peter
crossword experience and support you know. And when you think about it in a strange way,
[00:23:23] Peter
at opposite ends,
[00:23:25] Peter
they can ring each other or contact each other,
[00:23:28] Peter
any twenty four
[00:23:29] Peter
hours, seven days a week,
[00:23:31] Peter
to get that support that they may need.
[00:23:35] Jillian
Of the things that we have looked into in the most
[00:23:38] Jillian
recent past was the camp was certainly serving
[00:23:42] Jillian
an essential need. Once covid.
[00:23:47] Peter
Of course that’s always going to come up in every conversation
[00:23:50] Jillian
has,
[00:23:51] Peter
has obviously we were very fortunate to fit last year’s
[00:23:55] Jillian
camp in
[00:23:56] Peter
two weeks before Sydney went into lockdown. The first time
[00:23:59] Josh
we just, we just flew to that. Was that February or March or
[00:24:03] Jillian
something? That’s right. March twenty twenty. Yep.
[00:24:06] Peter
Whereas this year.
[00:24:08] Jillian
Yeah. It wasn’t a happening thing. It was
[00:24:10] Peter
just too difficult to be able to arrange it with people coming in from different states and all across Australia.
[00:24:17] Jillian
So that really started us to interact with the kids about OK, well we come to camp.
[00:24:22] Peter
What else can we do? So some of the things that we have done and are still
[00:24:27] Jillian
doing is like a day trip to Luna park.
[00:24:34] Peter
So we’ve got for amusement parks across Australia that we were
[00:24:38] Peter
we had planned to do
[00:24:40] Jillian
it weeks ago.
[00:24:42] Jillian
Now that didn’t happen but also things like
[00:24:45] Jillian
a lot of good old
[00:24:46] Jillian
zoome is our best friend.
[00:24:48] Peter
And as Peter just alluded to, we can talk to our
[00:24:51] Peter
friends if we get
[00:24:52] Peter
the timing right. I know what time it is in London any time of the day and just enabling Them to be able to just touch
[00:25:01] Jillian
base obviously using social media because that is their primary source of communication these days.
[00:25:07] Peter
But we’re also, we’re looking at, apart from the fact we
[00:25:10] Jillian
were doing a day surfing at manly beach
[00:25:13] Jillian
with Craig withington who was an expert lifesaver.
[00:25:16] Jillian
But his best
[00:25:17] Jillian
friend is this gentleman who
[00:25:20] Peter
made contact with us. And this
[00:25:21] Jillian
is the other great thing about
[00:25:23] Peter
the organisation and the programdeveloping.
[00:25:25] Jillian
We have
[00:25:26] Jillian
people now coming to us and going, hey, we’d like to
[00:25:30] Peter
share our skills and our funds
[00:25:33] Jillian
with your kids. And so this
[00:25:36] Peter
fellow was, was actually a national swimmer in his day
[00:25:41] Jillian
and he has CMT.
[00:25:42] Peter
So he’s supporting the program that we have at manly beach. We’ve got another
[00:25:46] Jillian
guy who is the skipper of yachts
[00:25:50] Peter
through an Association called making waves foundation.
[00:25:54] Jillian
So that’s basically for people who can have disabilities, they can go out and sell on Sydney harbour. So that’s been the other Lovely thing
[00:26:00] Peter
that we’ve been able to collaborate with. Some of these other
[00:26:03] Jillian
community groups to be able to give our kids
[00:26:06] Peter
just a day trip now at the moment it’s
[00:26:08] Peter
not a Sydney based but we are looking at Melbourne and Brisbane as well
[00:26:11] Jillian
depending on what the activity is, of course. But
[00:26:14] Peter
that whole collaborative community,regional
[00:26:17] Jillian
rural thing
[00:26:18] Peter
is it always keeps it fresh because
[00:26:21] Peter
we’ve always got somebody else who’s there going hey,
[00:26:23] Jillian
we can see what you’re doing.
[00:26:25] Jillian
And we really want to be a part of it. So that’s, that’s
[00:26:28] Peter
inspiring for us as well.
[00:26:29] Josh
It sounds incredible but also very time consuming. So is that your paid to kind of organize this or not?
[00:26:37] Peter
No, not at all. So all members of CMT, Australia, all committee
[00:26:41] Peter
members and I am a committee member and I have been for 15 years. I the newsletter I am the Facebook moderator, all those types of things is obviously involved from a, from a listening to his wife’s point of view. And then we do
[00:26:56] Jillian
so voluntary. It’s all voluntary, to be honest as well. I don’t want to get paid for it
[00:27:01] Peter
because that’s
[00:27:02] Peter
not what it’sabout
[00:27:04] Peter
in the UK I’m. They’re the same. Karen doesn’t get paid just I don’t know. It would be different if we got paid.
[00:27:12] Jillian
I know the US
[00:27:14] Peter
family Association has a bit more funding.
[00:27:17] Peter
So they’re able to financially support their volunteers a little more than what we can but that’s not sour grapes. That’s just what it is. I think
[00:27:24] Jillian
Volunteering is you need
[00:27:26] Peter
to not be to not being paid.
[00:27:28] Jillian
I think that’s really important that
[00:27:31] Jillian
yeah
[00:27:31] Jillian
And then in this case we just we can just
[00:27:34] Peter
be guided by Sam to Australia by the organisation that we are under.
[00:27:38] Jillian
Certainly from a funding point of view,
[00:27:41] Jillian
we are always
[00:27:42] Jillian
actively seeking funding opportunities.
[00:27:45] Peter
That’s has been most recently been able to successfully
[00:27:48] Jillian
grab some funding from the Commonwealth bank.
[00:27:51] Peter
Ultimately, Ultimately we’re just
[00:27:54] Jillian
looking for donations and the kids do CMT high tea sort of things and sizzles citizens at Bunnings and
[00:28:02] Peter
things like that just to to keep the word out there and to,
[00:28:05] Jillian
to keep the funding and the funding that is used to support kids coming to camp from different states
[00:28:12] Jillian
and also to subsidise the cost of camp. Yeah.
[00:28:17] Peter
Privilege to work with these
[00:28:19] Peter
kids and that’s why we volunteer.
[00:28:21] Peter
And any funding that we go, one hundred percent
[00:28:24] Peter
of it goes straight to the kids to get Them on campus, but it’s costly to get
[00:28:29] Peter
kids from Perth and from remote and regional areas into
[00:28:34] Peter
Sydney or Melbourne or Brisbane to
[00:28:36] Peter
to participate. So we’re Constantly on the lookout, make sure that 100 percent of the funding that
[00:28:42] Peter
we receive through donations goes to the kids.
[00:28:46] Josh
Would they be an average costs for a kid to attend the camp or is it different because of where they’re coming from?
[00:28:52] Jillian
And coming from the camp itself this year. Well next year will now be
[00:28:57] Peter
three hundred dollars,
[00:28:59] Jillian
which is quite cheap.
[00:29:01] Jillian
Is very cheap.
[00:29:02] Jillian
Yeah, I mean we try to compare and we look at
[00:29:05] Peter
the amscot Association also runs camps. There obviously got a totally different disability. They have a much higher adult child ratio.
[00:29:14] Peter
We sort of don’t need that so we don’t need to fund that as much.
[00:29:18] Jillian
Yeah, so you’d be looking at in most cases because the kids are under 18, you’d be looking at two airfares accommodation for the
[00:29:26] Jillian
parents, or at least the mum or the dad who was coming over
[00:29:29] Jillian
one day that easily for our Perth
[00:29:31] Peter
And we’ve got at least four, four, five, six families over there,
[00:29:35] Jillian
the ones over
[00:29:36] Peter
there
[00:29:36] Jillian
spending upwards of two thousand dollars for the weekend. So we run the camp from the Friday night to the Sunday afternoon. Yeah. And that’s why we try to support. We don’t fully fund,
[00:29:48] Peter
we can’t afford to fully fund Them,
[00:29:51] Jillian
but we try our best to make it equitable for everybody
[00:29:54] Peter
and ensure that we can promote and,
[00:29:56] Jillian
you know,
[00:29:57] Peter
give Them money for airfares and
[00:29:59] Peter
travel expenses related to, to get in.
[00:30:03] Josh
And the CMT high tea you mentioned before, is that a way that the kids or families or schools or whoever it is can help and fundraise.
[00:30:11] Peter
So that’s, that was just that actually came from another another kid from South Wales when
[00:30:15] Jillian
he was, when he was raising money he, we took him over
[00:30:19] Peter
to the U.K.
[00:30:20] Peter
and he was raising money for it. And he came out
[00:30:22] Jillian
with a little catchphrase to me. He was having a
[00:30:25] Peter
mighty heart,
[00:30:27] Jillian
so it hasn’t been a common
[00:30:28] Jillian
thing. It’s not like this morning take sort of being
[00:30:31] Jillian
one of
[00:30:32] Peter
the biggest challenges, of course on any volunteer organization is to get people to, to get on board to be able to
[00:30:37] Jillian
promote and organize these things. So we don’t have those types of resources available to us,
[00:30:43] Peter
but we just encourage
[00:30:44] Jillian
the kids and a lot of cases it’s just
[00:30:46] Peter
sitting out there. Our youngest daughter stood there in year two and did a little presentation to her primary school. Yeah,
[00:30:53] Jillian
it’s, it’s all just about awareness. As Peter said, we love doing this. It’s not
[00:30:58] Peter
about the money. Obviously we want to make ourselves sustainable enough so that we can continue to
[00:31:03] Jillian
provide support
[00:31:05] Peter
to our families, to attend camp and to attend,
[00:31:08] Peter
you know, amusement park
[00:31:10] Jillian
days when covid allows.
[00:31:13] Jillian
But Ultimately, it’s about being there for the kids and helping Them
[00:31:17] Peter
feeling empowered by their statement and empowering others with their,
[00:31:22] Jillian
with their ability to step
[00:31:25] Josh
speaking of covid. And before we hit the record button today we were talking about the road map in New South Wales and, and things like that and even the National road map. So is a two thousand twenty two camp on the cards. Yes it is.
[00:31:40] Peter
A camp is planned here in Sydney in March twenty twenty two will be staying in central Sydney. It’s a bit of a celebration for us because it’s our 10 year camp
[00:31:51] Peter
and we’ve got
[00:31:52] Peter
activities like yachting on Sydney harbour. We’ve got manly beach surfing with fellow who has CMT and we going to live in a park. So a really exciting camp planned and we hope to get CMT kids from all over Australia to, to join us for the camp.
[00:32:13] Josh
Yeah, that’s awesome. That’s very special. 10 years, well done,
[00:32:16] Peter
we didn’t win and we certainly hope to we would get at least 10 years when we started, but it’s really a great achievement.
[00:32:23] Josh
So was that really early on You were thinking we can do this from then on.
[00:32:28] Peter
Yeah well we did. Yeah. Somebody actually asked us, how are you going to make this sustainable when, when we first started, we did, we sat down and we did our business case for the CMT Australia Association to support us in the, in the early days. And we always thought that we would be making this a sustainable long term activity
[00:32:50] Peter
It wasn’t just a one off camp or a couple of years and we’d let it go. It was about making sure that we give as many kids as possible,
[00:33:01] Peter
an opportunity to experience Aussie kids and to meet their peers.
[00:33:06] Jillian
And speaking of how many, and I was thinking about that we
[00:33:10] Peter
would on average have between 25 and 30 kids attend camp every year.
[00:33:15] Jillian
But our database
[00:33:17] Peter
which sounds very clinical and harsh but I do have an Excel spreadsheet
[00:33:21] Jillian
of the families who’ve
[00:33:22] Peter
contacted us whether they’ve just been diagnosed with a two month old, or whether they’ve got a 17 year old who they finally had diagnosed.
[00:33:30] Jillian
And there’s over three hundred families on that database. So that
[00:33:34] Peter
three hundred families across Australia and New Zealand who have a Cleveland
[00:33:38] Jillian
diagnosis of Santé may not have interacted a lot with ask Them another way, came across the line. We’ve had
[00:33:46] Peter
a total of just under two hundred kids attend camp over the last 10 years.
[00:33:51] Jillian
And I know when we first started and Peter mentioned that when we
[00:33:55] Peter
did the business ties to the organization,
[00:33:58] Jillian
the
[00:33:58] Peter
president at the time Darryl. Obviously we knew we were going to lose money the first couple of years. It’s just what it is,
[00:34:04] Jillian
minimum numbers when you go to visita
[00:34:07] Peter
sporting wittkamp or something like that you’re always going to lose that.
[00:34:10] Jillian
And I do remember speaking with him a couple of years after that and saying
[00:34:13] Peter
how fortunate we were to have him actually
[00:34:17] Peter
stick his neck out and say, hey,
[00:34:18] Peter
I’m prepared
[00:34:19] Peter
to risk a bit of
[00:34:21] Peter
the organization’s money for this.
[00:34:23] Peter
But he does and I suppose it demonstrates where we’re coming from.
[00:34:27] Jillian
That he then commented that
[00:34:29] Peter
he was always going to support it because he knew that there was the likes of Peter and I.
[00:34:34] Jillian
And now I’m breaking my arm patting myself on my back. I suppose what I’m trying to show is that
[00:34:38] Peter
we are so passionate about supporting these kids
[00:34:41] Jillian
that
[00:34:42] Peter
giving Them a leg up, giving Them a hand. He knew that it was going to be successful. Yes it would take a
[00:34:47] Jillian
few years to break even. And we certainly
[00:34:50] Peter
did, it took us some time but now
[00:34:52] Peter
we know that through our funding we have
[00:34:55] Peter
benefited not just financially
[00:34:58] Peter
but benefited socially and emotionally for our kids. And I know and I
[00:35:02] Jillian
can say it truthfully that the support that
[00:35:06] Peter
the organization and the santoso kids program gives, has changed
[00:35:11] Jillian
lives and has actually impacted on
[00:35:14] Peter
a
[00:35:15] Jillian
couple of kids who
[00:35:17] Jillian
had thoughts about ending their life.
[00:35:20] Peter
And we feel honored to have been able to support
[00:35:25] Jillian
those kids at a time when they were at their lowest. And
[00:35:29] Peter
we’re not trying councillor’s we’re not psychologists, we’re normal human beings one of which has CMT.
[00:35:36] Jillian
And I think that that,
[00:35:38] Peter
that’s the, all of the kids give each other and that we’re able to facilitate
[00:35:42] Peter
really can make a difference and has proven to make a difference. And that,
[00:35:46] Jillian
I feel like my work here is done.
[00:35:48] Peter
You know, what I mean? I mean, I’m still doing it,
[00:35:50] Jillian
but I just feel so happy that we’ve been able to to get ourselves involved insomething
[00:35:55] Peter
and to volunteer with that in mind. Yeah.
[00:35:57] Josh
Well that’s interesting point You raise about Mental Health and that must be a really difficult because you know, it is such a sensitive topic. It’s a difficult thing to do. How are you able to, you know, that’s amazing that you are able to help people. I guess you must have to have certain plans in place or things like that to help support people in their Mental Health on these camps and in general.
[00:36:21] Jillian
Yeah, it’s a Mental Health. Always a difficult thing because it does always seem to be a
[00:36:26] Peter
topic of the mouth without sounding flippant. It does, I, I do feel like that when I’m,
[00:36:31] Jillian
when we’re filling in funding submissions it’s about Mental Health, but particularly so at the moment with locked out and with with the changes in our whole life. Mental Health support has been really important And
[00:36:43] Peter
I, and I do, I do say here before I even speak about this that we don’t have any training. I mean, I’ve certainly had a little bit of stuff in terms of Mental Health
[00:36:53] Peter
in early childhood but I’ve not done anything major. And neither of us to try and experts.
[00:36:58] Jillian
The biggest thing with Mental Health is being there is allowing these kids to talk to eachother
[00:37:05] Peter
and to open up those opportunities. I think we’ve found it.
[00:37:08] Peter
And I don’t like to be gender
[00:37:12] Jillian
specific,but
[00:37:13] Jillian
the males in our group maybe because Australians
[00:37:19] Peter
do a lot of you playing the footy and you’re sporty and everything. It’s more obvious for our male, very young gentleman in the group
[00:37:28] Peter
that they can’t do that.
[00:37:30] Peter
And that they feel frustrated and disappointed and,
[00:37:35] Jillian
and it
[00:37:36] Peter
can’t get to a point where it does end in turmoil. And
[00:37:40] Peter
we have been, as I say and obviously I won’t speak specifics but we’ve been privileged to be able to support a couple of our of our young kids who have had those
[00:37:52] Jillian
Mental Health down moments
[00:37:55] Peter
supporting it through just being there, giving Them a call know
[00:38:00] Peter
Providing a community for Them. Yeah, yeah. A network of support with their peers.
[00:38:06] Peter
The people
[00:38:06] Peter
involved and you know they had their other
[00:38:10] Peter
networks of professional
[00:38:11] Peter
assistance. But for us it was about just Providing
[00:38:15] Peter
that contact. Providing that understanding from seeing it from a safety point of view. Yeah.
[00:38:23] Josh
Well, I think what you’re doing is important because people at the core a lot of the time is they just want to be seen and valued for who they are. And that’s actually what you’re saying, Jillian, a typical male. As a kid growing up from teenager childhood teenage years, you’re right, is sports is the, the biggest, toughest who can kick the ball the furthest who can hit the ball the longest all those things. And so that’s just their sense of value and then being left out of that, and that is really isolating. Peter, you touched on that before. And so a quick plug of a previous episode of our podcast. We interviewed Tara lord who uses animals and animal assisted therapy, but she is qualified, but she said the same as you it’s, it’s about Providing that sense of Community friendship, letting Them know that, that they are valued.
[00:39:13] Peter
And they’re not alone
[00:39:14] Peter
that
[00:39:15] Peter
sharing that journey and can provide advice and support.
[00:39:19] Josh
Yes I think you should give yourself more credit about how qualified you are because you’ve been doing it for 10 years
[00:39:26] Peter
and have the
[00:39:27] Peter
letters after the name.
[00:39:29] Josh
Well, I also want to ask you before we, we do wrap up. Volunteering is obviously been a passion of yours for a long time. We touched on scouts a few times. I just kind of want to hear about how you both got involved with scouts and indirectly is has that kind of informed the camp that you’re running now?Yeah,
[00:39:45] Peter
yes. So I got involved in scouts when I was eight years old,
[00:39:51] Peter
quite accidentally in a way My and my mother was looking for something that we can
[00:39:55] Peter
do that because we couldn’t play sport. And she happened to be speaking to one of the local shop assistants who was an
[00:40:01] Peter
akela done with the local
[00:40:04] Peter
Cub group. She wasn’t expecting us to stay and I talk about ask
[00:40:10] Peter
my brother and myself,
[00:40:12] Peter
but we stuck it out and we found because there was no competition in it.
[00:40:16] Peter
And we had a group of really good leaders
[00:40:21] Peter
who gave us opportunities who
[00:40:24] Peter
took us on
[00:40:25] Peter
and supported us. So even though we couldn’t walk far or carry heavy packs, they they allowed us to walk without packs and then somebody else had to carry it orwhatever. And we hada
[00:40:38] Peter
particularly good scout leader
[00:40:40] Peter
so much so that my brother and I both became queen scouts
[00:40:45] Peter
in our, in our early teens. And that then developed into Volunteering as a scout leaders. So Cub scout leaders for
[00:40:54] Peter
for much of our, of virtually all of our adult life and the skills that we learned there. And Jules had a similar journey in guiding and scouting herself and the skills that we learned there. We then transferred across to,
[00:41:08] Peter
to run the camp. So we knew
[00:41:11] Peter
it was
[00:41:12] Peter
second nature for us. When we take kids away you know, what are the safety things we need to think about? What do we need to do it at night and
[00:41:20] Peter
what what
[00:41:21] Peter
things to look out for if kids are feeling uncomfortable or scared or whatever,
[00:41:28] Peter
that became second nature for us. So it was a very powerful
[00:41:31] Peter
way of making sure that we could
[00:41:35] Peter
run the camps themselves
[00:41:38] Peter
quite beyond all of the fundraising and and other stuff that needs to occur outside.
[00:41:44] Peter
And we also went in camps don’t just happen. We,
[00:41:47] Peter
we need to, we were going in, eyes wide open about the amount of work that we needed to do to make sure that that was successful.
[00:41:56] Jillian
I think it’s also a point at my my
[00:41:59] Jillian
history is very
[00:42:00] Jillian
similar to that. So I won’t bore you with my guiding and scouting,
[00:42:04] Peter
and we did meet through scouting.
[00:42:06] Jillian
But I think
[00:42:07] Jillian
the thing about the
[00:42:08] Peter
camps and how we were able to feel confident, I suppose,
[00:42:12] Peter
to stand up to Sam to Australia and say well this is what we think is going to work. Because we’ve seen it
[00:42:16] Jillian
work with scouts and guides.
[00:42:18] Peter
But it’s also a lot of my role in an early childhood with my early childhood hat on,
[00:42:23] Jillian
is speaking to families
[00:42:24] Peter
and making Them feel comfortable in my early childhood environment.
[00:42:28] Jillian
It’s the same thing with coming back to it now. It’s making families feel reassured
[00:42:33] Peter
that when they let their child go on camp,
[00:42:36] Peter
they’re not going to do anything awful and we’re not going to humiliate Them orwhatever.
[00:42:40] Jillian
So our comfortableness, if
[00:42:42] Peter
there’s such a word
[00:42:44] Jillian
with speaking with families advocating for children,
[00:42:47] Jillian
because
[00:42:48] Peter
I feel very strongly about that as an early childhood educator, but advocating for that
[00:42:53] Jillian
disabled child,
[00:42:55] Peter
including the one I was speaking to who that said no, no, no, no, no, and it
[00:42:58] Jillian
was finally when we got to speak to dad that dad turned it around.
[00:43:02] Jillian
It’s helping Them understand that
[00:43:04] Peter
this is really important
[00:43:05] Peter
for the kids to be able to attend. And so the camp was a natural progression
[00:43:11] Jillian
for our families to accept
[00:43:13] Peter
and to to go with
[00:43:15] Josh
speaking of your career in early childhood education which is the ongoing, correct me if I’m wrong here. But I believe you also had an award recognized for your professional career too.
[00:43:25] Peter
Yeah, I’ve surprised myself greatly that I am
[00:43:28] Jillian
a regional finalist in the family day care association’s
[00:43:33] Peter
early childhood educator of the year. Yeah that’s that sort of comment
[00:43:37] Jillian
on the southern southern Sydney and Sutherland Shire finals. Yeah. Which is
[00:43:41] Jillian
it just goes with my, I mean
[00:43:43] Jillian
that’s obviously a paid profession and I run my own business
[00:43:46] Peter
from home. I have worked in early education centres, a long daycare centers,
[00:43:51] Peter
but we worked for it most of my working life. I worked in early childhood so
[00:43:56] Jillian
it is something that I
[00:43:57] Peter
feel that’s another passion.
[00:43:58] Jillian
Yeah, it’s another thing that I sit in on my,
[00:44:01] Peter
on my days when I work and I love again I love advocating for children.
[00:44:06] Peter
I love the relationships that I have with my families and particularly
[00:44:09] Jillian
in a family daycare
[00:44:11] Peter
since I only have four children a day in care.
[00:44:14] Jillian
So I only have six families plus the
[00:44:16] Jillian
whole week.
[00:44:17] Peter
So getting to know Them, nurturing Them, giving Them information about their child’s development. I know, Josh we touched on that
[00:44:24] Jillian
again before we started.
[00:44:25] Jillian
You know, the challenges of parenting have,
[00:44:27] Peter
have really ramped up in the last couple of years with,
[00:44:30] Peter
you know what with covid.
[00:44:32] Jillian
But also just giving parents that reassurance that they’re doing the right thing
[00:44:36] Peter
and making Them feel like we’re a team and that we’re able to collaborate together
[00:44:40] Peter
for the best of their children. That’s sort of probably where a lot of
[00:44:43] Jillian
my sense of purpose is
[00:44:47] Peter
like it’s corny again but I do feel like I
[00:44:50] Jillian
do make a difference to my families and my little catchphrases,
[00:44:53] Peter
but I put the family in family day care. So my children and family daycare, know my family. I know my daughters, my daughters they know
[00:45:02] Peter
it’s really important
[00:45:03] Jillian
for our families to feel supported by the wider community.
[00:45:08] Peter
And I’m, I’m a real advocate for that.
[00:45:11] Josh
Yeah, I’ve heard a lot of really beautiful stories about family daycare. As you said the connections that can be formed and friends of ours have had such a great experience with it to this day. He’s the oldest is ten so he hasn’t been there for a long time but she still keeps in touch and
[00:45:28] Peter
I still have contact with. So I did, I’ve done it in two different times. I’ve done it just before
[00:45:34] Peter
we had children,
[00:45:35] Jillian
and then I picked it up about eight years ago again,
[00:45:38] Peter
while we’re still in contact with two of the kids who I had twenty five years ago.
[00:45:42] Jillian
So that and the families. And I think that’s something that doesn’t have to happen with everybody.
[00:45:46] Jillian
And I say that to my family, as I said don’t be scared off. I’m not a stalker.
[00:45:51] Peter
But
[00:45:51] Jillian
if you, if you want and if you need that,
[00:45:54] Peter
I find that extremely satisfying and, and
[00:45:57] Jillian
look at the end of the day.
[00:45:59] Peter
It’s beneficial for the children, isn’t it? And that’s what it’s all about. Just the same
[00:46:02] Peter
with some TLC kids or early childhood.
[00:46:05] Jillian
There’s a theme happening here, you know,
[00:46:07] Peter
we need to be strong advocates for our children because they always have the kids themselves.
[00:46:12] Josh
Now for anyone who’s listening and has been very attentive at the start they may have noticed I said that Jillian, you were a finalist in the trans created leadership award and obviously talking to Jillian and Peter here. So I thinking, I wonder why Peter wasn’t in that Well, you know, just touching on that with your career and professional as a professional in childhood education and as well as your Volunteering Jillian with your daughter school as a part of the committee there is that right
[00:46:39] Jillian
Yes, yeah just pay and say and, and the usuals and I tend to be and
[00:46:44] Peter
back on this, anything that I join I tend to end up
[00:46:47] Jillian
doing something on the committee
[00:46:50] Peter
at the president or the vice president, or I want to to the treasurer that spoke to me
[00:46:54] Peter
about money, but you know,
[00:46:56] Jillian
I suppose it’s all just part of supporting
[00:46:59] Jillian
a team of people who were there.
[00:47:01] Peter
I’ve just always been like that. Like, it’s just how life is you. You need to get back. You need to support
[00:47:08] Jillian
the same with
[00:47:08] Peter
scouting and God gave us so much as kids and as
[00:47:12] Jillian
young adults.
[00:47:13] Peter
And so now we can give back and we do that through the Game Show and, and various other things.
[00:47:19] Jillian
We need to get more volunteers. We need to get more people to volunteer because it makes a community a better community.
[00:47:25] Josh
Exactly. Couldn’t have said it any better than myself. We need these volunteers are the backbone of communities. So and you said it earlier, yourself not being paid is what makes Volunteering. So special because there’s no vested interest, it’s people doing it out of a passion, they’re just getting paid. So I think that’s as you said that’s what makes it so special.
[00:47:44] Jillian
Absolutely absolutely.
[00:47:46] Josh
So remind everyone one more time where they can connect with CMT Australia, if they want, even just to follow along. On the social media, maybe they want to make a donation. Where can they do that?
[00:47:59] Jillian
So social media, we certainly have Facebook and Instagram for both CMT Australia and that’s what they called. And also say about Aussie kids is on Instagram.
[00:48:08] Peter
We do have a Facebook page for our Aussie kids for the exposed page for obvious reasons.
[00:48:14] Jillian
And it’s only open to children
[00:48:16] Jillian
and all their family members who were there to support Them. So that wouldn’t be something that we would let you in to but that’s okay.
[00:48:24] Jillian
But checking out the
[00:48:25] Peter
CMT, Australia website, S.A. All right,you
[00:48:30] Jillian
or emailing us at, say annotators, kids at Gmail dot com. Also, you get onto the website again, you can
[00:48:38] Jillian
have a look and see if you
[00:48:39] Peter
want to consider a donation
[00:48:41] Peter
either to the organization or to the kids
[00:48:43] Jillian
or just email me
[00:48:45] Peter
at the CMT Aussie kids at Gitmo dot com. And that would be able to give you all of those details.
[00:48:50] Josh
Perfect. Well, thank you both Jillian Jillian for your time this morning. I really appreciate it And for sharing some of your story for raising awareness for CMT. Obviously I’ve learnt a lot about it in this last hour and yeah, just wanting to wish you all the best for the two thousand twenty three camp. And I can’t wait to see all the updates on social media and see how it’s going.
[00:49:10] Peter
Thank you so much, much appreciate the support and love I’m on your social media as well. So certainly when this podcast is, is up in Nevada it will be well distributed amongst Santé pages.
[00:49:24] Josh
That sounds great and you know if there are some young mentors of your camps, of other young people with CMT, let’s share their story about nominating Them in the young achiever awards, which is open now. So people can do that at young achiever awards dot com. Lovely. All right Guys thank you so much
[00:49:41] Peter
sir. I
[00:49:42] Josh
hope you enjoyed that interview. If you liked it or any of our other episodes, it would be great if you can write and review the inspirational australian’s podcast. It really helps us out if someone you know, needs a little taste of inspiration. Why not let Them know about this podcast? And if you haven’t already, make sure you subscribe. So that you won’t miss an episode. Join us each week as we talk with ordinary Australians, achieving extraordinary things. You can always head to our website at awards Australia dot com slash podcast for more information and details on each guest. Now before we go, I’d like to thank Annette our producer. Here’s a fun fact, and that is my mum and our other hosts, Geoff is my dad. This podcast is brought to you by awards, Australia, a family owned business that proudly uncovers the stories of people who make a difference for others. We can only do this with the support of our corporate and not for profit partners as they make our awards programs possible. So do you know someone making a difference? If you’d like to recommend someone to be guest on the podcast, get in touch through our Instagram page, inspirational Australians, or maybe your business might like to sponsor the podcast or get involved with the awards. We run to website awards Australia dot com for more details. Until next week, stay safe. And remember together we make a difference. Thanks for joining us today on the Inspirational Australian’s podcast. We hope you enjoyed listening and have been inspired by ordinary Australians achieving extraordinary things.
[00:51:20] Jillian
So it’s goodbye for another week. Remember, together
[00:51:24] Josh
we make a difference.
