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I was so fatigued... Brushing my teeth was a win · The R4R Podcast: Road to Zero

0:01
How do you say your last? Name.
0:02
Yeah, I was about to say do you want to steer on that?
0:03
It's Getches. Getches sounds like it should
0:05
have AZ on the end. Getches.
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Getches Yeah, you are good to go whenever you're.
0:10
Ready. Thanks, James.
0:12
Yeah, we try and do the rolling starts, but I don't know, it
0:16
never feels it never feels like it works properly.
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It's you always have to do an introduction.
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So welcome to another episode of the Running for Resilience
0:28
podcast. This episode we have none other
0:31
than community legend Tim Fulton and we also have Lauren Getches.
0:36
I've been informed how to say you all know Tim, he's founder
0:41
of Running Rear, but also just stalwart of the AFRA community
0:46
and the man behind T-shirt I'm wearing and merch and designs
0:51
and just, yeah, great bloke. So it's great to have you Tim
0:54
and Lauren as described on the website, Mum de Sage who has an
1:01
ultra rare neurodevelopmental condition.
1:05
You've researched coal and Co authored papers examining
1:08
Australia's health and support systems in meeting the challenge
1:11
of rare diseases. I want to start by saying
1:16
something and this is again from your words.
1:20
Sage is simply sage. She's the sunshine in our days.
1:25
She's the most loving, warm, resilient and determined person
1:29
we've ever met. She gives her all.
1:32
She's always smiling brightly. Her greatest loves in life,
1:35
aside from her family and friends, are chocolate and dogs.
1:39
Now before we dive in, Laura and I also want to take you back in
1:43
time. I'm pretty proud of this one to.
1:46
When you were pregnant with Sage, who's now 4I managed, I
1:50
managed to find a questionnaire that you filled out where you
1:54
were talking about your eldest, who's now 6767.
2:00
Six turning 7. 6 and you were quoted pregnancy 2.0 has been
2:05
really challenging with the interrupted sleep.
2:08
We sometimes joke that at this rate, his sister will probably
2:11
sleep through before he does whatever she has in store for
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us. We're well prepared.
2:18
Wow. That is something that is wow,
2:23
thank you for that. Thank you.
2:26
Were you well prepared? I think we were.
2:29
I think we were. At times it hasn't felt like it,
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but if I look back with a bird's eye view, I think we were.
2:37
And if you want to jump in a little bit, I think you knew
2:40
Sage had. If you want to go into the
2:43
disease a little bit, 10 days in you had.
2:46
Increase, yeah. So during that pregnancy, and I
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remember filling out those questions during that pregnancy
2:53
as well, but I kind of felt pulled away from the work that I
2:58
was doing in quite a general health policy space to work for
3:01
a group of Australians that I didn't feel were getting
3:03
represented properly. And that was the rare disease
3:06
community. I had a typically developing
3:08
toddler and I was pregnant a second time with a textbook
3:11
pregnancy. And I started to do some
3:13
consultancy work into rare disease and I got to talk to
3:16
other parents who were, I say other now, but it wasn't other
3:20
to me then. And this was this new group of
3:22
parents who were navigating this rare conditions, rare disease.
3:26
And I ran focus groups with them.
3:27
So I sat like this and I talked to these parents.
3:31
I learned so much things that I now know GPS and paediatricians
3:34
don't know. And that is what led me to
3:39
shaking my husband awake when Sage was 10 days of age.
3:43
We had a normal birth. We were home from the hospital
3:45
within 16 hours. I think of giving birth, shaking
3:48
him awake and saying, Brad, I think Sage has a rest in the
3:52
room. So yeah, it was that intuition
3:56
hit me like a freight train that night.
3:58
And then the three years that followed was my quest to get
4:02
people to take me seriously and and for the system to allow me
4:06
the opportunity to get her the diagnosis that I ultimately knew
4:09
we would get. Not what she would be diagnosed
4:12
with, but that there was something to find.
4:14
Yeah. Can you take me back to that
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moment you shook your husband away?
4:18
Yeah. Can you remember what set you
4:22
off? Yeah, I think it's really
4:25
tricky, right? Anyone that's been in those
4:28
first few weeks, whether it's just first, second, third,
4:31
pregnancy and birth postpartum is rough.
4:35
And I remember I didn't, it was really that tenth night that I
4:38
felt that I couldn't not say what was in my head anymore
4:41
because I was definitely in a battle with myself around little
4:44
things that I was noticing about her that, you know, to everyone
4:48
else she was perfect. Babies are perfect, right?
4:52
But to me, I was like, oh, that's slightly different to her
4:54
brother. Oh, that's not a family trait.
4:58
Like that's not the way our eyes are shaped, You know, my, my
5:01
husband and eyes, her little toes look a little different to
5:04
me to, to how her brothers looked.
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So there was these like little physical markers that I could
5:09
see and it took me back to those focus groups that I run with the
5:13
other parents who talked about these dysmorphic features that
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that are associated with syndromes that are like super
5:20
mild. And, you know, in the
5:21
population, these are normal variances.
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So, you know, I've actually got a friend of a friend who has the
5:27
same little cute quirky toes as my daughter, but she's that's it
5:30
in her body. Her body's got that one little
5:32
quirk or a variance for Sage. I was seeing more and more
5:35
little markers. So that night was kind of the
5:39
first time I could articulate what I was feeling and fearing.
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I think because having seen into what those families were going
5:47
through in the work that I did during my pregnancy, there was
5:50
almost a reluctance to say it out loud because then maybe that
5:54
would make it true. Like when it goes from being a
5:56
middle of the night sleep deprived rumination to like, OK,
6:01
I feel like this is real and I need to tell someone.
6:03
And it started with my husband. So fear, but also maybe, you
6:10
know, I'm I'm someone who through my professional career
6:13
and my personal life, I'm someone that like has to know
6:15
the answer. So information is power.
6:18
Like once you know something, you can do something about it.
6:20
And that has been my approach to everything since then.
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So I think it's not unusual if you know me that I wouldn't just
6:29
sit on something and think about it.
6:30
I would, I would put it into motion pretty quickly.
6:33
So from that 10 day mark, we we kick started a freight train.
6:38
Really we've just it's been a ride.
6:40
But basically every day since I've done something towards
6:44
either getting Sage diagnosed or strengthening what we know about
6:48
her condition for for other families like ours.
6:51
Yeah, and look, there's so many places we can go from now, but I
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want to bring Timbos and I think then we can start using the
7:00
similarities and and going from there.
7:03
I want to take you back in time, Timbo.
7:05
I went back and read a few of your newsletters all the way
7:07
back to 2016. I've been diagnosed with stills
7:12
disease, a rare autoimmune disease that causes severe
7:15
fatigue, fevers, rashes, weight loss and joint information.
7:22
When I read that, I think sometimes most of us are immune,
7:26
for lack of a better term, to the professional gobbledygook
7:30
of, like, science. And when we hear symptoms, it's
7:32
like, yeah. But what?
7:35
The one thing that has always stuck with me, and I think it's
7:39
the story behind the symptoms that really helps land at home,
7:43
was when you spoke about how you were so fatigued that if you had
7:49
a day where you brushed your teeth, that was a win.
7:53
And that has just always stuck with me.
7:55
And I just want you to take yourself back to diagnosis when
8:03
you thought things were wrong. Yes.
8:07
So there's actually a beautiful parallel I think between Lauren
8:11
and I story in so many different ways.
8:14
Firstly, Sage and I share a diagnosis state.
8:18
So I was diagnosed, I was first admitted to hospital on 26th of
8:22
February, 10 years ago, so yesterday, 10 years ago.
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And Sage was diagnosed a year ago on the same day.
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And similar to Sage, you know, it was a constellation of
8:37
symptoms. You know, any one of those
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symptoms you know, you might overlook to a degree, but when
8:44
they start coming together you begin to realise the seriousness
8:48
of, of what's taking place. I think similar to Lauren, you
8:53
know, there was a build up and it kind of crescendoed at this
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one point where I was driving to training and I just felt like
9:03
something was off. And I was like, at that point I
9:06
didn't have the vocabulary. And I remember driving and
9:09
going, I think I have cancer. And it was, you know, I had had
9:14
family members who had been affected by cancer.
9:16
And so that was the only word that I had to describe, I guess,
9:22
the intensity of what I was feeling without knowing what I
9:26
was experiencing. And I remember arriving at
9:30
training and my feet, I was just in so much pain, like I could
9:35
barely run and it didn't really make a lot of sense.
9:39
And and then I remember a friend at uni and I were, we went to
9:46
the National Museum as a part of one of our group assignments and
9:49
I couldn't walk up the stairs. And I'm like, what's going on
9:53
here? And then, you know, it was
9:55
summer at that point. I think the air conditioning had
9:59
gone at the place that I was working, but I was just sweating
10:03
so badly. And like, my skin on my scalp
10:07
was just super dandruffy. And I'd never had dandruff
10:12
before. And then, you know, I'd wake up
10:14
with this sore throat that it felt like you couldn't swallow
10:18
and then it would go away. And then I get the fevers again
10:21
in the afternoon and then in the early morning.
10:24
And you know, the point where my fingers started swelling up, I
10:28
couldn't bend them, my elbows started swelling up and
10:31
everything was just going off. And, you know, I went to the GP
10:35
and sort of like having these symptoms that sort of come and
10:39
go and it kind of feels like a really bad cold, but it doesn't
10:42
then turn into congestion and then it disappears and then it
10:46
comes back. And I remember my, my GP saying,
10:52
you know, we got to look into a lot of things because, you know,
10:56
it's a bit ambiguous, but it might be out of onset stills
11:01
disease, but it's not going to be that because it's so rare.
11:03
And so we're like, OK, we'll go get the bloods and, you know, we
11:08
get the results back and my inflammation levels are through
11:12
the roof. Absolutely through the roof.
11:13
She's like, I've never seen, you know, inflammatory markers as
11:17
high as if you need to go go straight to the hospital.
11:20
Yeah. So go to the hospital, you know,
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they start doing tests. You know, they're looking for,
11:26
you know, autoimmune like antibodies.
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So whether it's autoimmune, nothing comes back.
11:30
They're looking at oncology. Nothing comes back.
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They're, you know, taking scans of, you know, my organs.
11:37
And they're kind of, they're like, we don't know why they're
11:40
inflamed, but they are. And we don't know why these
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things. And then they kind of went,
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well, we don't know what it is, go home and if it doesn't get
11:47
better, come back. So, you know, went home, nothing
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got better. Went back to the GP and she's
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like, what are you doing here? Like you need to be in hospital.
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Like this is super serious. So we got back to hospital and
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we don't know what section to, you know, to send you to.
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So you get bounced around infectious diseases and
12:08
oncology, and then eventually someone put the pieces together
12:14
and you know, you've got all the diagnostic criteria for this
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ultra rare condition known as adult onset stills disease.
12:23
We don't know what causes it. And kind of he's a sheet of
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paper. Go home and figure life out.
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That's it. More or less, yeah.
12:35
So you start on, yeah, treatment, but as, as we'll
12:39
discuss it is a lot of diagnostic challenges and then
12:44
there's a lot of treatment pathway challenges that come
12:47
simply by having a rare diagnosis.
12:52
It sounds like as frustrating and as ambiguous as it was, it
12:58
was a pretty clear cut definition and diagnosis
13:03
eventually. Eventually, yeah.
13:06
So Still's disease is what they call idiopathic, which means
13:10
they don't know what causes it, but it's also a diagnosis of
13:14
exclusion. So you have to exclude every
13:17
single everything else. So, you know, exclude virus,
13:21
bacteria, cancer, autoimmunity. And if you can rule all those
13:26
things out, then you can you can diagnose Still's disease.
13:30
And a part of that is because of the issue, which is your immune
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system's made up of two major players, your innate immune
13:40
system and your adaptive immune system.
13:42
So your adaptive immune system is what's at play with
13:46
autoimmune diseases. So the body doesn't recognise
13:49
itself and it starts producing immune cells that will attack
13:54
that particular protein or cell. But you can test that because
13:59
you can see the antibodies circulating typically.
14:02
And, and so the challenge with stools disease is it's actually
14:07
an issue with the innate immune system, which is a far more
14:10
generalised immune system. It's the thing that kicks in,
14:14
you know, early on and lets the body know, hey, there's
14:17
something going wrong here. And it starts signalling to the
14:20
adaptive immune system. Hey, we need to Start learning
14:22
what's going on so we can produce targeted cells, you
14:26
know, to take the cold out or the bacteria or the cancer cell.
14:33
But because the innate immune system, you know, it just goes,
14:37
oh, there's something wrong. And then it's like, oh, this is
14:40
not turning off, We better send more because it's not fixing it.
14:43
And it's that what that leads to the inflammation and the
14:47
destruction of, you know, the joints and the skin.
14:49
And it's why it's so generalised.
14:51
It affects every system because the whole body is just going,
14:54
something's going on. Let's, let's do something about
14:57
this. Yeah.
14:58
That's super overzealous. It so it sounds the the fire
15:04
exclusion it, it sounds like it's wrought with frustration.
15:09
And I imagine even more so with your experience.
15:17
Somebody works in the rare disease community 10 to 12 days
15:21
in saying that their kids got rare disease.
15:24
How were you met by our professionals?
15:27
So there's a real divide with, and I don't want to generalise
15:31
too much because there's an incredible, you know, I've met
15:35
some incredible medical professionals, but there is a
15:38
real sense that there's clinical knowledge.
15:41
And then there's me who was a health social kind of
15:45
generalist. So I've got a degree in Social
15:48
Research. I, you know, I can run it, I can
15:50
run a research study, but I'm not a clinically trained medical
15:53
practitioner. So there was definitely some
15:56
hesitation when you walk into someone's clinical setting, AG
16:00
PS office, a paediatrician office, and you come to them
16:02
with information that's not how they're used to playing the
16:05
game. I think a little bit.
16:06
And that's a really common experience of rare disease,
16:10
people that have a rare condition or their parents.
16:13
If if you're talking about a child, is that it kind of flips
16:18
the script a little bit on, on doctors.
16:20
If you have, you know, got this documentation or this list that
16:23
you've prepared of like here, there's all these weird
16:26
unrelated things going on. And here's what I think it might
16:28
be. So there's definitely hesitation
16:31
and a bit of suspicion, especially as again, that
16:35
overlay of being a new mom. Like there's this sense of like
16:38
you're anxious, like, you know, and they would say, do you have
16:42
a history of anxiety? Well, I did.
16:45
So I'm honest. And I say, yeah, I'm, I've had,
16:47
I've lived with anxiety. I've got anxiety.
16:50
And I would be trying to be really clear and say that is not
16:53
this, if you will listen to me, I can tell you and I can point
16:57
you to the resources if you don't, if you're not aware of
17:00
them, that these things that I'm noticing are really real.
17:03
So absolutely the theme of frustration has run through our
17:08
journey as well. And it, and it's a shame, but it
17:13
really has had to rely on us kind of cherry picking
17:18
specialists and almost personality has come into it,
17:23
which which is really sad because there's a lot of
17:26
privilege and health literacy that I bring to this journey
17:29
that we've been on that the other parents don't have.
17:32
So the fact that I have been able to manoeuvre us through the
17:35
system to get to the right people is something that just
17:38
simply isn't possible for other families.
17:41
So the frustration for me has almost felt wider than just for
17:45
our case because we ultimately got to where we needed to be in
17:48
a pretty fast way. So the average diagnosis time
17:52
for a rare condition is above 7 years.
17:55
So yeah, so for Sage to get her diagnosis at 3, considering she
18:01
was the first in Australia and no clinical geneticist that we
18:05
can find has ever heard of her condition.
18:07
So for me to get hit up there by three, in a way, the frustration
18:11
is kind of dispelled by the fact that it feels remarkable that I
18:14
was even able to do that. The frustration is that it's not
18:18
that simple for others. And the frustration is that
18:22
she's not the first in Australia.
18:24
There's undiagnosed kids with her condition right now at
18:27
school or at home that their parents haven't got the tools
18:31
that I had. So and I'm and I'm sure we'll
18:34
get to this, but that's kind of where that impetus to do
18:37
something about that and feel like I couldn't just kind of go,
18:41
well, good for us, you know, we got our answer.
18:44
Let's stay in our lane and and make sure Sage gets what she
18:47
needs. Yeah.
18:47
You don't want to pull the ladder up.
18:49
No, exactly. So yeah, heaps of frustration,
18:52
but it's more systemic than than frustration for us because we
18:57
got lucky. I feel that, you know, I don't
19:01
know what I believe, but I feel that that there was a reason
19:05
that I could know where we needed to be.
19:07
And I could kind of like my husband a few times has referred
19:11
to it like an old school video game where I was like collecting
19:15
the things that I would need along the way to for the
19:19
journey. So, you know, there was skills
19:22
and knowledge and education throughout my life, even, you
19:25
know, well before that period in my pregnancy that I now use in
19:30
the work that I do. So yeah, it's, it's frustration,
19:34
but also there's, there's more inspiration than frustration.
19:40
We are going to get to the advocacy stuff or the the the
19:44
change, but I want to linger a little bit on the stories that
19:49
you both have. We'll stay with you, Lauren,
19:54
after diagnosis in record time. We just heard what happens.
20:01
Yeah. So you mentioned in the intro
20:04
Sages condition is neurodevelopmental.
20:07
So I talked about sort of the physical markers that were like
20:10
the first signs for me, but that was then overlaid in the 1st 12
20:15
months of life with developmental delay.
20:17
So that's the normal stock standard milestones that babies
20:22
are supposed to meet at a particular time and and she
20:24
wasn't meeting those. So that is where finally we
20:28
started to get some more traction is that I was saying
20:30
there was something wrong before we really had I guess what a
20:35
general JP or paediatrician would consider as evidence.
20:39
So once we had that overlay of both the physical markers and
20:41
the developmental markers, we were able to get SAGE again,
20:46
just because I knew the system. Part of knowing the health
20:49
system also means that I knew the disability and the support
20:51
systems available. So I was able to get SAGE on to
20:54
the NDIS. Started the process before she
20:57
was one, but got her on there by the time she was 14 months old.
21:01
So that means that she was already having early
21:03
intervention therapies across every domain.
21:06
So we're talking physio, hydrotherapy, speech, OT like a
21:11
full schedule. I always joke that I'm also just
21:15
like her taxi slash diary manager slash coach.
21:20
Slash all. The things, right?
21:22
Most importantly, her mom. So I really made sure that that
21:28
quest for diagnosis happened alongside making sure that she
21:31
got the supports early. So that understanding of health
21:34
that I had meant that I knew the first five years for a child and
21:37
and I suspected it would be neurodevelopmental was the most
21:41
important window for her life trajectory.
21:43
So our neuroplasticity is at its absolute highest in those first
21:46
five years. So for me, it was like, we've
21:49
got to throw everything at this until we know what it is.
21:52
We just treat it based on what we're seeing, right?
21:55
And so the incredible team of allied health professionals
21:59
really got around us and got around our family.
22:01
So what the diagnosis piece meant when I mean, she was over
22:06
2 years into, into NDIS and you know, full week of therapies
22:10
every week, what the diagnosis layer added was precision.
22:14
So we then to some extent, it's very obviously, it's such a
22:19
rare, rare, rare syndrome that there was 6 papers, that's it in
22:24
the world. This research would have been
22:27
quick. Yeah, that's right.
22:29
No, so there was, there was, there was 6 like I guess
22:32
studies, published studies and they were on a group of, I want
22:37
to say there's probably 40 cases in the literature.
22:39
So we now know that there's probably between 80 and 100 that
22:42
we know of identified cases of families in the world.
22:47
In the world, Yeah, in the world.
22:48
We know a second in Australia now.
22:50
We're not alone. We're not alone on the island
22:53
anymore. Go along.
22:54
Teenager in Sydney. But what it meant that was that
23:00
even in those six papers there was information that was really
23:03
useful to us for SAGE. So we learnt that and it was
23:07
kind of a missing piece that there was a motor planning
23:10
element to this. So knowing that it's got a
23:13
neurological, so your brain, the way the brains sending the
23:16
messages around the body, knowing that that was part of
23:19
the manifestation of the syndrome changed the way that
23:22
our therapist thought about it and it really unlocked
23:24
something. So we kind of without getting
23:28
too technical, adapted the way we were sort of working on sages
23:31
therapies to really focus on the messaging between her brain and
23:34
her body. That has had a huge like the
23:37
difference that that has made. The other thing that is
23:42
remarkable when you're dealing with something so rare is that
23:46
by getting the diagnosis, because as you use the word
23:49
constellation, you know, I love that word.
23:51
Sage is very much a constellation.
23:54
We say sometimes an umbrella because we then had the
23:56
diagnosis. These papers was mentioning
23:59
things that we hadn't even really fully investigated for
24:02
Sage, like she didn't have symptoms of a heart issue.
24:05
No one's looked at her heart. Should we go see a cardiologist?
24:08
So we did, we lined that up. She's got a heart defect.
24:11
Well, she's got a variance in heart that was benign.
24:13
Like we didn't know about it. We wouldn't know about it until,
24:16
you know, maybe she went into cardiac arrest one day and and
24:19
we didn't, you know, have any reason to know why.
24:22
So what it did was it unlocked precision in her therapies, but
24:25
it also unlocked all the things that we hadn't even thought to
24:28
look for. So it's huge.
24:31
But then once you've kind of gone through bent through that
24:34
first little, I've got more information, we're going to do
24:36
this, we're going to do that. Then you're kind of left with,
24:38
oh, well, we've kind of hit the limit of what is out there for
24:42
this. We're doing all that we can do.
24:45
But like, what does say, does life look like when she's an
24:48
adult and how is her body going to cope with, you know, the
24:53
additional strain and change of of puberty?
24:57
Like no one's looked at that. And so that's when you hit that
24:59
dead end and you go, well, because we're dealing with ultra
25:03
rare, we actually don't know. There's so many questions.
25:06
And that's kind of the rob of like, well, who's going to
25:09
answer them? This is not an attractive group
25:12
to to study. There's no money here.
25:14
Like, and we know that sadly, you know, as much as there's so
25:17
much goodwill, the scientific community needs grants to be
25:21
able to do their amazing work. So for me, that was kind of a
25:25
bit of a fork in the road moment where I was like, we've done all
25:30
we can do now without there being kind of more inputs into
25:35
our knowledge about this condition.
25:38
Yeah, you've done. You've touched on three things
25:41
that I want to mention. One you got going before you
25:45
knew what you were going with, and I think that's like really
25:48
useful for a lot of people, even say with mental health and R for
25:52
R is, yeah, look, there might be some precision that you need to
25:56
look down the track, but there are a few things that you can do
25:59
regardless of what it is that will improve your situation.
26:03
I think that gives people a better control.
26:05
So kudos to you for that. But then once you got the
26:07
precision, I think when people have that look, most of the
26:11
time, it's a good thing. Sometimes giving the identity
26:14
can send you down the wrong track.
26:16
In your case, obviously it was precise, but it labelling it
26:20
then allows you to take precise action.
26:22
I think that's that's incredible.
26:24
And one other thing we'll get to in the advocacy bit is how to
26:30
get around the the downsides of it being so rare.
26:37
You know, it's like a because there's 2 million people, but
26:41
there's all those different kinds of rare diseases.
26:43
So it's like, yeah. So it's a that's a hard, that's
26:48
a hard herd of cats to to get going.
26:52
But Tim, how did you go once you were able to put a name to the
26:57
madness? When I was first diagnosed,
27:04
obviously as we said, it comes with challenges simply because
27:07
it's rare and and because you're sort of on the peripheral of
27:12
attention in a lot of ways, it requires a lot of like Lauren
27:21
sort of described, like it requires you to know the right
27:24
pathways that you can utilise. So in my case, you know, one of
27:30
the first challenges is we have the PBS which is the
27:33
pharmaceutical benefit scheme which provides funding for
27:37
treatment for all Australians. But to be on the PBS there are a
27:43
number of criteria because obviously you you want to have a
27:47
sound mechanism for what you do and don't fund.
27:52
And for more common diseases then you do have the research,
27:55
you do have the evidence base, you do have the pharmaceuticals
27:58
looking into therapeutic opportunities.
28:02
But what happens when you're on the fringe?
28:06
And in the case of Still's disease, they sort of believe
28:11
that adult onset Still's disease may be the same condition as
28:15
juvenile idiopathic arthritis, which is on the PBS, but adult
28:20
onset Still's disease isn't. And so then you sort of pushed
28:25
into, you know, a moral quandary of, you know, your specialist,
28:32
you know, knowing that you might need a certain treatment, but
28:35
you can't access it. So then you get Co diagnosed
28:39
with a more common condition in order to be kind of put on on
28:42
the pathway. The problem is that with that is
28:47
that one you lose your recording of cases so you go, you know,
28:53
adult onsets to disease fix approximately 1 in 100,000 to
28:56
one in a million. But it might actually be far
28:59
more common than we think because we're not recording it
29:04
because you can't get treatment for it.
29:06
And so, you know, the case with SAGE, you know, we know of two
29:11
cases in Australia, but there might just be far more because
29:14
we haven't had gene testing, you know, applied in the appropriate
29:18
measures. So to sort of circle back, I got
29:22
put on a treatment plan for rheumatoid arthritis because
29:27
that would eventually get me access to what they call a
29:31
biologic. But to get access was, you know,
29:34
six to seven months in my case of really high steroids,
29:39
methotrexate, which is a chemo. And they sort of more or less
29:44
know it's not going to work, but it's like we want to test it
29:48
because it's far cheaper to attempt.
29:51
But the problem is now you've got high disease activity
29:55
alongside a treatment plan that comes with a number of side
29:58
effects. So it was really challenging
30:02
sort of going from feeling a bit off to things escalating within
30:06
a period of about two weeks and then finding myself in a
30:09
hospital bed unable to move. And then sort of got put on sort
30:15
of these really high doses of steroids and the methotrexate.
30:20
And I just got sicker. And it was 6-7 months of life
30:25
just having having no idea what life was going to be like going
30:29
forward. And that obviously comes with a
30:32
lot of mental challenges. And, you know, similar to
30:36
Lauren, you know, I began that search of all 22.
30:42
Is this what the rest of my life is going to be like?
30:46
You know, and there's sort of no advocacy groups for Still Seas
30:51
in Australia. So finding other stories is
30:54
really difficult. And, and a lot of the sort of
31:01
online communities that do exist, international ones that
31:05
typically the participants in those conversations are often
31:12
the people haven't got well. And so you're kind of left with
31:16
this picture of I'm not going to get better.
31:19
And when you know you're failing treatment for six months and
31:22
you've got one option left if this doesn't work, like what's
31:28
life look like? That would be daunting.
31:33
And again, that example of, I always tend to think of you
31:37
whenever I'm sick. It's not as bad as what Timbo
31:40
would have been through. I honestly, I, I can't imagine
31:45
the, the state of mind that you would be confronted with.
31:51
You spoke about you didn't have access to other people's stories
31:54
because of how rare it is. And I think something you're
31:56
both doing, something, Tim, I've seen first hand with you is how
32:00
extensively you've written about your perspective.
32:04
And even through those, what I imagine were the hard times,
32:09
Yeah, it sounded tough when you were writing, but you never
32:14
seemed to lose hope. Yeah, it was a it sounds funny,
32:22
but it it had to be an intentional thing.
32:25
You know, when I was lying on that hospital bed and in, I
32:29
think a few of my very early articles that I wrote, it's like
32:34
everything has been, I felt like everything had been taken.
32:38
You know, my physical health had been taken.
32:41
You know, I had to step away from work.
32:45
I had to step away from study. And, and as well, like, I think
32:50
up until my diagnosis, I had used a lot of external things as
32:55
this facade of who I was and this validation.
32:59
And so I was, you know, team, the athlete or team, you know,
33:03
the student. And when all of that got sort of
33:06
taken away, it was like, oh, I'm just left with myself.
33:11
And the only thing that I'm going to get to control in this
33:15
is my attitude. And so that became, I think the
33:22
North Star. It was like, all right, I got to
33:25
make my attitude count because everything else is not, you
33:28
know, not going my way and finding this delicate balance
33:35
between, as you said, hope, but not banking on everything being
33:41
getting better because if you're only North Star is getting
33:45
better, it's a pretty discouraging journey, you know,
33:48
for the 1418 months that it was. And so it was just for me.
33:53
How you? Handled.
33:55
Yeah. Everything not what would
33:58
happen. Yeah, and it was letting go of
34:01
the outcome. And it's this funny.
34:04
It's so hard, you know, I'm still learning it.
34:07
It's how do you hold on to the belief that I can get better
34:11
whilst accepting that I might not?
34:13
And. Welcome to life, my friend.
34:17
Yeah, what a question. Yeah.
34:19
And, and, and so I came down to a really simple principle that I
34:24
was going to measure my attitude by, which was in 12, in 12
34:30
months time, kind of look at myself in the mirror and say
34:33
I've given it everything I could, but being OK that
34:40
remission or getting better wasn't going to be the mark of
34:44
success. It was just that I'd showed up.
34:49
You have showed up. You're emotional.
34:54
What? What's coming forward?
34:59
I think, you know, part of why I started writing was that I
35:05
wanted to create the resources that I wish I had when I was
35:09
first diagnosed. And I think it's I think I'm
35:15
emotionally, you know, it's 10 years on.
35:18
I've had two major sort of flares during that that period.
35:23
And, you know, when we look at the statistics, you know, it's
35:28
most likely that I'm Poly episodic.
35:31
So I'm going to be going sort of in and out of permission
35:34
potentially for the rest of my life.
35:38
And it's sort of the challenge of, you know, like beings trying
35:49
to be so grounded in the day and being grateful.
35:53
Hey, I'm good now. But you know, literally a couple
35:57
of weeks ago I started my specialist appointment and she's
36:01
like, you've been more or less, you've been well for too long.
36:04
So if you were to get sick again, you have to start the
36:07
whole process of approval. And I think that's a big part of
36:11
like, you know, running rare. And what I'm trying to do with
36:14
this is that it's like we've got a challenge.
36:17
Why? Why is this the state that it is
36:20
and what can I contribute to improving that state?
36:27
You know, why do you know? And you know, running rear is
36:32
also about how do we rehumanize conversation around rare
36:39
diseases? You know, we can look at the
36:41
statistics, we can go, you know, when Sage was first diagnosed,
36:46
you know, one in 24,000,000. Why concentrate on that?
36:50
But when you change the conversation to early
36:53
intervention is going to change the trajectory of Sage's life.
36:57
That's something we can get behind.
36:59
And so often the rare disease community struggles against,
37:05
well, the conditions rare, like why?
37:07
You know, why pay attention? But when we, yeah, when we shift
37:12
the conversation to well, we have an opportunity to improve
37:16
someone's well being, you know, we might not have a cure yet.
37:20
And a cure might be a really long way down the road.
37:23
Guess what? We can take them from a 10% to a
37:25
20%. Is that worth it?
37:29
And that's worth it is. Yeah, we we're, we're pretty
37:34
closely aligned, mate. I and I remember thinking, and I
37:38
hope you can speak to this too, Lauren, one of the things, no,
37:43
sorry, I always put it back in our for ours lanes.
37:45
But we've seen successes that we haven't made it about the
37:51
individuals, the different kinds of individual struggles.
37:55
It's been very much about what rhymes.
37:59
Everyone's been through some hard, they've gone through it,
38:03
they've overcome it, they've found ways to get through and we
38:06
believe that people can get better and that seems to
38:09
galvanised everyone across different categories, different
38:12
struggles and it seems to be a way that people can get behind
38:17
it. Like you're saying, we're not,
38:19
we're not putting people in pigeon holes and we're bringing
38:23
them into the broad umbrella that is being human. 2 million
38:28
Australians, 7000. I crunched the numbers.
38:32
Believe it or not, 285 for for disease.
38:36
What is what is this much needed change look like?
38:42
Where does it start? What?
38:45
Yeah. What's your view of the
38:47
landscape? So for me, the adage is that
38:54
rare conditions aren't rare when you think of them collectively.
38:57
So any other condition with 2 million Australians being
39:01
affected, Can you imagine like how much funding there would be
39:04
and what a sort of priority that would be for our health system?
39:10
So for me, it's it's the need to look at a system that is
39:16
designed for horses. And this is the adage, right?
39:18
If you hear doctors are taught, I think mostly in America, but
39:22
I've heard that some Australian universities use this for their
39:25
Med students as well. We hear the sounds of hooves.
39:29
Think horses, not zebras. So the whole medical system is
39:34
designed for the horses and people with the rare condition
39:38
are the zebras. So they're the people that you
39:40
hear the hooves and and it's not a horse, it's a zebra.
39:44
That adage is used because time in medicine is money.
39:51
And we know that AJP appointment ranges between 7:00 and 11:00
39:55
minutes. And that's how the system works.
39:58
And I think that where. I would like to, I guess insert
40:05
myself and try and make a bit of noise is around this idea that
40:11
it's not fair to have a system that doesn't work for 2 million
40:15
Australians. Like if there's 2 million
40:18
families that have someone that they love that doesn't have
40:22
something that is well researched and well funded and
40:26
you know that every doctor knows the name of or at least can type
40:30
some details into their search programme portal and get the
40:35
print out on, that's a problem. And so that's the way we
40:40
approach Rare as we approach it as a collective.
40:42
That's why tomorrow, which is the 28th of February, the last
40:48
day of February, which is kind of clever because it changes
40:50
some years. It's not always the 28th,
40:52
sometimes it's the 29th. Especially unexpected with Rare.
40:57
It's about bringing us all together because when you do
41:00
that, suddenly you realise there's all these parallels.
41:04
Like so much of what Tim has just said.
41:07
I was nodding along and, you know, holding myself down on the
41:10
seat to not get out and give him a hug because we lived so much
41:14
of that. It sounded a little different
41:15
and it might have looked a little bit different, but those
41:17
feelings and all the things that Tim grappled with, our family
41:22
did that. True for Sage on her behalf.
41:26
You know, she goes in, in two weeks for her 4th surgery at
41:29
four years of age. Like letting my child go under
41:33
and handing her over to a surgical team is something I've,
41:37
you know, I've never going to get used to.
41:40
And so for me, it's like finding what are the levers that we can
41:43
use within the system to create systems that cater to the
41:50
majority, but also have ways like you talked about the PBS.
41:54
And I've done a bit of work in that space around cost
41:57
efficiency of, of pharmaceuticals and therapies.
42:00
And this idea that you have to have evidence that something is
42:04
effective before you can obviously fund it and make it
42:08
available. That's, that's good.
42:09
That's ethics. You know, we don't want to do
42:11
anything experimental, but for my daughter's syndrome, even
42:17
within the less than 100 people that we know about, every single
42:20
mutation is different. So my daughter is actually one
42:23
of one. So if they were in the current
42:26
system, and I hope that this isn't her lifetime, that there
42:29
is a therapy for Sage, we will have to go around the way that
42:35
the, you know, the, it's called health technology assessment
42:40
process works because they would want us to go through the entire
42:44
process for every single person because even within that
42:48
condition, it's not the same mechanism as a gene.
42:53
So that's like, that's wild. So for me, it's, we have to
42:57
think in platform approaches. We have to think if we, if
43:01
someone is making amazing progress over here in these
43:04
neurodevelopmental syndrome, it's not the same as my
43:06
daughter's, but there's similarities.
43:09
How do we share learnings? How do we create these
43:11
communities of practise, these sensitive expertise and other
43:15
countries are doing it really well.
43:17
Australia is on the way. We, we, you know, we have this
43:21
morning I spent 4 hours, you know, red disease conference
43:24
this morning, you know, at home with Sage, my headphones in and
43:28
talking to her about Paw Patrol. We're on our way.
43:32
But it is there's a long way to go.
43:34
So it's how to take something that is unique and you
43:38
absolutely can't treat it with a broad brush.
43:40
That's negligent and dangerous. But how do we build the systems
43:44
that allow for things that don't fit the way they've always
43:48
worked? So it's, it's a big challenge
43:53
and the way that we do it is collective voices.
43:55
So you know, days like tomorrow, weeks like this week where you
44:01
know, we've, we've planned a lot this week to try and shine a
44:03
light on, on us as a collective community.
44:06
That's the way we start to, to make people go.
44:09
Oh, well, I know Sage, but I actually also know someone else.
44:11
He has a rare condition and I like, you know, I do that with
44:15
people. I know you're going to know at
44:17
least one person, probably more than one person in your life.
44:20
So when you start to think of it like that, like you say, not as
44:24
a, you know, a really abstract term like a rare disease
44:28
community, like what's that? When you start to go, well,
44:32
that's Sage and it's John in my life, or it's Tim and it's Nick.
44:37
Like that humanising element and bringing it back to the fact
44:41
that rare is unknown, right? That like rare is something that
44:44
is operating outside the system with not much understanding and
44:48
knowledge. Like you said, we can all relate
44:50
to that feeling like that experience of not knowing what
44:55
we want to do for our career, like where we're going to end
44:57
up. That is the same feeling that
45:00
parents and individuals with a red disease feel, but it is
45:03
around our health trajectory, our child's quality of life
45:07
trajectory. So it's bringing that human
45:09
connection back and going, you know, this is something that we
45:14
can all find empathy for because we all know these themes, if
45:17
they're just concentrated in this experience that these
45:20
families are going through. And in fact, it's common.
45:22
It's not rare. Yeah, it it sounds like, and I
45:28
might be wrong here, it sounds like you guys might have a way
45:33
forward if given a magic wand. Is that right?
45:37
I think. Or is the first step really to
45:39
bring everyone together to find the way?
45:41
Yeah. Yeah.
45:42
And, and what's happened sort of in the Australian rare disease
45:46
landscape sort of in the last decade is that Rare Voices
45:50
Australia emerged. So they became the peak body for
45:53
rare diseases. So I was in the inaugural
45:56
ambassador programme and Lauren's now taken, taken that
46:00
sort of responsibility over with Rare Voices Australia because
46:04
previously we were trying to play the game of 7000 rare
46:07
diseases or 7000 microorganisations.
46:11
Often, you know, it might be just a family trying to advocate
46:15
for change. And So what Rare Voices
46:17
Australia did was sort of bring it together and go, we're going
46:20
to represent the 2 million Australians living with the rare
46:22
disease. And the progress that, you know,
46:25
is being made is enormous. You know, we had the National
46:29
Strategic Action Plan for Rare Diseases released in 2020, and
46:32
that was a big inspiration, you know, for me to start running
46:37
rare. And, and I think as well, George
46:42
sort of spoke about it in his podcast and, and in his writings
46:45
about sort of weak ties and power of weak ties.
46:49
Yeah, the power of weak ties. And it's this concept that, you
46:53
know, your network is very different to my network, and
46:56
Lauren's network's very different.
46:57
But when we start coming together and realising that, oh,
47:00
we're actually heading in the same direction, we can begin to
47:03
pull levers that we would otherwise not have access to.
47:07
And so, you know, firstly, we saw the emergence of Rare Voices
47:11
Australia. Now we're beginning to see these
47:14
umbrella groups. So, you know, rare metabolic
47:17
diseases are now coming together and they're advocating as a
47:20
larger group than the individual conditions themselves.
47:24
And so again, you know. And is the benefit there that I
47:30
would pull an arbitrary term out, but that 90% of the
47:33
treatment looks the same within groups?
47:36
Yeah. And rather than going on your
47:38
own path, you can go through one path and then get to the end and
47:41
take your own path. Yeah, exactly.
47:42
And I think if we pull it back to, you know, the parallels with
47:46
running for resilience, you know, we started as a run.
47:49
People started coming together and then, you know, we hit kind
47:53
of this critical mass where people like, oh, why don't we do
47:56
a Friday run or a Monday run? And so, you know, we're still
48:00
still at the dock, but now we have these three runs.
48:03
And then those groups sort of built up.
48:05
And then someone else reaches out.
48:06
And I think it was Denman Jen at 2 before 10.
48:10
And they were like, oh, let's start a run out here and so.
48:14
All under the one. All under the one, all looking.
48:17
After their own photographs. Yeah, exactly.
48:19
And then as we've grown and, you know, obviously Wednesday's huge
48:23
now and it can be so difficult for a new timer to come into an
48:28
environment like that if it's just not quite fitting with
48:32
their personality. And then that's sort of when we
48:34
had that emergence of the communities for residents, you
48:37
know, why do we just have to run together?
48:39
Why can't we do other things together?
48:41
And so why I talk about this is that running for resilience
48:47
provides a spearhead that opens up opportunities that we
48:50
otherwise wouldn't be able to have to foster these other
48:54
communities that sit under it. But everyone benefits from, you
48:58
know, the spearhead all gone together.
49:00
And, and it's similar with Revoices Australia.
49:03
They're doing fantastic work in policy and legislation.
49:07
They're trading new ground that we've never, never treaded
49:12
before. But the rippling effect is that,
49:15
you know, the changes that they make is going to make a change
49:18
to the umbrella groups, which then make a difference to for
49:21
the family and then the individual.
49:23
And it's the same thing for, you know, running for resilience.
49:26
Our attitude is to save one life from suicide as many times as
49:31
possible. But to do that, we've got to
49:33
have healthy connections right through the community.
49:38
And, you know, we've got to have families that can look after the
49:41
individuals and we need those families to be looked after to
49:43
look after their friendship groups.
49:45
And then those friendship groups get looked after by, you know,
49:48
the, the community for resilience group.
49:50
And that community for resilience group, you know, is
49:53
looked after by the wider running for resilience kind of
49:56
network. And it's the exact same thing.
49:59
It's like we've got to come together, but we've also got to
50:02
have the ability to be comfortable with, you know, as
50:07
you described before, the catalyst of our experiences is
50:11
all different. You know, the catalyst for you
50:13
starting running for resilience was different to the catalyst
50:16
for me, starting running Rare, which was different to the
50:20
catalyst for Lauren starting BBTF families, but holding space
50:26
for one another and going well. Actually, what we need, there is
50:29
so much overlap and let's make that super economical and so
50:35
that we've got the bandwidth and the resources to deal with the
50:38
things that are different. Yep, Yep, mate who wrote, who
50:44
wrote buddy I I want to ask you guys a couple questions before
50:53
we go. One is, it sounds like hopefully
50:59
not for long and hopefully less so than what it was, but it
51:02
sounds like the rare disease experience is a lonely one.
51:09
Somebody out there, particularly because of the name of this
51:13
podcast, running, running rare and rare diseases, they're going
51:18
through something they would feel alone probably.
51:21
Maybe you could chance. What do you have to say to them?
51:28
I might rephrase the question for you.
51:30
Tim yes, I think it's like, you know, I think for me it starts
51:40
actually like us all taking responsibility for looking out
51:44
for one another because I think all of us are trying to create
51:48
infrastructure or resources that we wished either we had or
51:53
someone we knew and loved had. And so I think it's like you
51:58
can't say you're not alone. I think we've got to be visible
52:03
in showing people that there's someone out there that cares.
52:06
And so, you know, with running rare, the really simple formula
52:10
is we know there's about 7000 rare diseases.
52:14
You know, my life goal is to run for each one of those.
52:18
And it's about, I think people putting themselves out there and
52:22
kind of having your hand out. Like we've got to put our hand
52:26
out so that if someone does need to reach for it, you know, it's
52:29
not in our pocket. And so I think as well.
52:35
So you telling that person in a sense be the change I as as well
52:42
as like. Yeah, I think.
52:43
Be kind to yourself, but maybe it's time.
52:46
But it's in your. Time yeah, I think that's The
52:49
thing is it's not it's, it's not putting the burden or
52:55
responsibility onto them. I think the big thing that we
52:58
champion with running for resilience is that, you know,
53:01
together we just keep moving. You know, it's not you just keep
53:05
moving, keeping your lane, you know, it's together.
53:09
We can't we do it. And so I think it's hard because
53:14
sometimes people are just genuinely alone, you know, and
53:20
and and sometimes it's of no fault of their own.
53:24
And I think that's where it's so important to for the collective
53:30
consciousness, you know, to be aware of these conditions, to
53:34
have an insight into what life might be like, you know, as a
53:38
mom or a father of someone going through an experience.
53:43
And I think that's, you know, a part of it is we've got the
53:46
first pillar of the National Strategic Action Plan for rare
53:49
diseases is awareness. Yeah.
53:52
It's not research, it's not policy change, It's awareness.
53:56
Because if we can improve awareness, then all those other
54:00
things flow out of it. Should do or should do, Yeah.
54:03
Something pretty powerful that I shared with Tim this week is
54:06
that I followed Running Rare for a long time before I sent Tim a
54:10
message. I didn't feel like I belonged in
54:14
the rare disease community until we had our diagnosis.
54:18
I feel differently about that now.
54:19
And I would say to anybody you know who may be listening, that
54:23
is on any sort of diagnostic journey, whatever that might be,
54:27
that don't wait till you have an answer to reach out for the
54:30
support because chances are there are people out there who
54:32
are willing to extend it to you. I followed it is and I followed
54:38
Tim. And so I was so inspired by what
54:40
Tim was doing locally here in Canberra, but I didn't think
54:45
that I could tell him who I was or our story or the fact that I
54:51
was running just to keep my mental health afloat on our
54:55
treadmill in our spare room. That's also our Home Office and
54:58
also our guest bedroom. Hardest work Renaissance room,
55:02
the hardest working room in the house.
55:03
We say, you know, and, and that like our little girl is at risk
55:09
of childhood onset seizures, right.
55:12
So I would put her there on like a little pull out couch, you
55:18
know, kids couch thing in the entry of the the spare room and
55:22
have her like watching a cartoon or something for 30 minutes so
55:25
that I could get that five KS out so that I felt like I could
55:28
get through the day And I couldn't see the connection.
55:32
I can absolutely see it now, but I couldn't see the connection
55:35
with reaching out and sending him a message and going, Tim,
55:39
we're not nine month wait for the genetic testing results
55:42
where I'm in the middle of an agonising nine month wait to
55:45
find out if my daughter has a rare condition.
55:46
And I don't really know like how to get through today, but I'm
55:50
just going to run and then I'm going to, you know, make dinner
55:53
and just keep going through this.
55:56
And I think that what you said about the hand being there, I
55:59
wasn't ready to take it, but I knew it was there.
56:02
Like I knew that Tim was someone who I could reach out to when I
56:06
was ready and when it felt like I had what I needed to take that
56:13
step towards improving my health.
56:17
Like I think for me, so much of what I talk about and my
56:20
advocacy is obviously for SAGE, for the system, for the 2
56:23
million Australians. There's also a piece in this
56:26
around caring and being a carer and being a parent who becomes a
56:31
carer and being a partner who becomes a carer for potentially
56:35
an adult. You know, there's all these
56:37
different versions of this where mental health is just part of
56:41
this melting pot of what the rare disease community is living
56:45
through. And you know, you won't be
56:47
surprised to know that people with a rare condition are more
56:51
likely to suffer from mental health concerns because that
56:54
overlap is huge. And so for me, I think that that
56:58
adage of having the hand out, not just saying, you know, we've
57:01
heard a lot of this in the last four years on the on the journey
57:04
that we've been on is let me know if there's anything I can
57:07
do for you. Like that puts the onus back on
57:10
me when I'm drowning in Sage's appointments and like
57:15
researching till 2:00 AM to try and figure out what's going on
57:18
and what should we do next. Like sometimes making it really
57:21
clear and structured, this is where we'll be at this time.
57:24
This is what we're going to do. This is what it's going to look
57:26
like. You don't have to come, but if
57:29
you want to come, we'd love to see you.
57:30
Like we'll be there whether you come or not.
57:32
And we'll be there next week as well.
57:35
It took me a long time from a lot of people who kept showing
57:39
up for me for me to be able to then take them up on it.
57:43
And I think that that's something that I will take away
57:46
from this experience in what I'm hoping to give to others.
57:49
So the parallel for us is that in making a not for profit
57:54
foundation for our daughter's syndrome is that we've had
57:57
parents that reach out to us and we send them like a welcome
58:00
email with some information. They're gone because they're not
58:03
ready. It's really hard.
58:05
Like we talked about it a little earlier, finding out something
58:08
that you weren't necessarily ready to hear.
58:11
I knew it was coming. Imagine if you didn't know it
58:13
was coming and you got handed a condition like, you know, Tim's
58:17
experience where life looked like it was going one way and
58:20
then it crash landed in your lap that it was all going to change.
58:25
My job as an advocate is also to just make the information
58:29
available, make the make the supports available and to just
58:33
be open for people to come when they're ready.
58:36
And I think that there's such a beautiful lesson in that.
58:39
And Tim leaves and breathes that like the articles that he has
58:43
written that I have also gone back and read and was reading
58:46
during that time. Like, probably one of the people
58:48
that you would never have dreamt was reading about Still's
58:51
disease, which is not something that I need to know about, but I
58:54
could relate to Tim's story. So yeah, it's unbelievable.
58:58
But I think that for me, that's that's what I can do.
59:03
This is the good. Like, I mean, talked a little
59:06
bit around, like grappling with was this meant to happen in my
59:11
life? Was this the cards I was
59:12
supposed to have? And, you know, feeling like I
59:15
knew the system and, and does that mean that I've got to fix
59:20
it? Like, no, it's not my job.
59:22
And as Tim said, there's so many amazing people that are trying
59:25
to do that. So it's not my job.
59:28
But what I do feel really confident about is that I can
59:33
make sure that what our family has been through that we just
59:37
make a softer landing for the next family.
59:41
And I think that, you know, what I know and understand of running
59:45
for resilience is that we all have Hard Knocks and we've all
59:51
been through very different stories and very different
59:54
hardships. But it's about if you manage to
59:58
get out of that and you pull each other up, then what can you
1:00:01
do to make somewhere that someone else lands a little
1:00:04
softer next time? And and like what's the?
1:00:09
What's the thing that you needed that wasn't there for you?
1:00:12
I think that's something that we've both related to immensely
1:00:15
is like, well, what would have been the thing that would have
1:00:18
made that difference for me? And is there a way that I can,
1:00:21
you know, build that for someone else?
1:00:25
What sort of came to mind, Lauren, when you were sort of
1:00:27
describing that was one that consistency.
1:00:30
You know, I think it's a big part of why running for
1:00:33
resilience has been as successful as it has, you know,
1:00:37
today is that, you know, we are on rain, not hail.
1:00:42
We're on rain or sun rain asterisks.
1:00:45
You know asterisks. As we get bigger, we're having
1:00:47
to do more beer, Yeah. Yeah, yeah.
1:00:49
But one of the things that like I really enjoy doing on a
1:00:52
Wednesday night is, you know, volunteering and, and helping,
1:00:55
you know, try and welcome people into our community.
1:00:59
And what I often hear is like, I've been following you for
1:01:02
ages. You know, it might have been a
1:01:04
year and but there's been some catalyst and then they've,
1:01:09
they've, they've shown up and, but they've been able to do that
1:01:14
because they know every single, you know, now Sunday, Monday,
1:01:17
Tuesday, Wednesday, Thursday, Friday and Saturday, there's
1:01:21
going to be a running for resilience community somewhere
1:01:24
in Canberra ready for them. And, and I think that's the
1:01:29
important thing is that it, it needs to be in your time.
1:01:36
You can't push this, you know, I can't push you to be less
1:01:39
lonely. You know, you, I've, you know,
1:01:41
personally, I've had experiences, I've been in rooms
1:01:45
where I've been struggling and it's like it doesn't matter that
1:01:49
I'm surrounded by people. Like I felt so lonely, not
1:01:53
because of anything that they were doing, just simply because
1:01:56
of what I was trying to process and come to understand and that
1:02:00
experience. But equally, I've had, you know,
1:02:05
so many occasions where, you know, I'm like to just like, I
1:02:09
just don't want to go. Like I'm just not feeling well
1:02:11
tonight. She's like, now I go.
1:02:13
You would be better for it. And, you know, always better for
1:02:18
having gone out. And I think in some of those
1:02:22
really tough times when a lot of things were changing, it was
1:02:25
like running for resilience was the one constant.
1:02:29
When everything else was in flux, it was like I'm not alone.
1:02:35
When you speak about improving it for the people after you, I
1:02:41
know you're doing that now. I know you've done it without
1:02:45
Ferrari, mate. Honestly, it is nothing without
1:02:49
the work you put into it and that feeling that's making you
1:02:54
emotional right now, that's going to be for somebody else
1:02:59
later as well. Other people, including myself,
1:03:02
get value out of it. So thank you for all that you've
1:03:05
done. Thank you for all that you've
1:03:07
done. There is no doubt in my mind
1:03:11
that the work you guys are doing to bring everyone together, 2
1:03:15
million Australians, 7000 diseases, but all rhyming in
1:03:20
that people are facing something that is filled with ambiguity
1:03:24
and fear and that they don't have to do it alone.
1:03:27
They can do it in different ways.
1:03:30
But together. I think it's clear as day that
1:03:34
something good will come of it if you guys keep going and maybe
1:03:39
maybe you need a rare for resilience subchapter.
1:03:43
Maybe that's something that can happen where because there'd be,
1:03:47
there'd be a few, I mean 2 million, there'd be like a few
1:03:49
thousand in Canberra. So maybe that's.
1:03:51
That'd Get Me Out of my. Spare room for sure.
1:03:55
Well, I don't know. There's something in it there.
1:03:57
There is something in it. Shared struggle shared
1:04:00
overcoming of struggle seems to ah, good.
1:04:04
You know, it kind of builds you up for next time.
1:04:06
Thank you guys so much. Seriously, the work you're doing
1:04:13
is great. And Timbo order pleasure, yeah.