Home » Podcast » Jillian & Peter Critchley, creating awareness and advocating for kids with CMT

Jillian & Peter Critchley, creating awareness and advocating for kids with CMT



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


Connect with CMT Australia on Facebook

Connect with CMT Australia on Instagram

If you would like to help or know more, email to cmtaussiekids@gmail.com

Check out the CMT Australia website 


Want to know how to Rate and Review a podcast, see this article

Follow us on our Inspirational.Australians Instagram Page

Want to nominate someone? (It can take as little as 2 minutes to recognise someone making a difference)

Like some more information on Corporate Partnership?



[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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


[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.