I remember that day so clearly.
I was at a friend's house,
and my mum called to tell me the news,
and I was so excited.
I naively thought that,
"Well, this is it! You know,
the cure is coming,
give it five, ten years, and then CF
will just no longer be part of my life,
and I can be so-called "normal".
So it's not quite how things turned out.
So, although we thought, twenty-five years ago
with the discovery of the gene,
that there would be a cure very shortly,
that didn't turn out to be the case,
because we had to learn so much science.
There was discussion that perhaps there was
three or four, maybe five different mutations
that were disease-causing,
and of course we've learned a lot
in those last 25 years,
and that there's over 2000 mutations
that are--that have been discovered.
So there was so much science
that had to be discovered,
before therapies which target the mutant protein
could be developed.
And because of that
they've been able to find new treatments,
and one of them being "Kalydeco",
which is a new drug they've discovered
which I'm fortunate enough to be on.
I still have to do treatments in the morning,
I have to do two nebulizers,
and I have to do physiotherapy,
and it usually takes me between an hour
and an hour and a half.
People take things for granted like doing laundry
and making your bed, kind of thing,
and before this drug I struggled with that.
It's nice because I can wake up,
and I don't have that urgency to feel like
I have to cough, like I did before.
And basically my lung function has increased,
and my weight has increased,
and I just feel amazing,
and for that I'm truly grateful.
The bottom line though, for me, is that
there's always hope.
There is always something happening,
there are always dedicated people working
to try and find an effective cure or--
--effective control or, ultimately,
a cure for this disease, which is…
so difficult to live with and to manage,
and on an emotional level, it really takes...
a significant toll.
Never mind the physical levels.
For me, living with CF, I think comes with
some personal responsibility.
You know, I'm fortunate enough to still be here,
almost 40 years later,
and to be well enough to actually make a contribution,
so I formed a team called Shanny's Stompers.
And we started off really small,
just, I think, 4 or 6 of us on the team,
and we did our CF Walk,
we raised a couple thousand dollars,
and we were pretty pleased that we could do that.
And so now, 11 years later,
we've raised almost 300,000 dollars
for that vital CF research and for patient care.
So I'm very proud of what we've been able to achieve
and the awareness that we've been able to spread.
Really, I find the strength to do that
for my family and my friends, you know?
I have an incredible support system
who love me and support me in every way,
and, you know, I think of all the friends
that I've lost to this… painful disease.
And I… I don't know why they're gone
and I'm still here…
But I suppose one day I'll figure that out.
But I need to honour them,
and I need to be strong for them.
Do the treatments, every day, never give up,
always look forward, always look positive,
and remember them.
Because I'm lucky to even still be here,
almost 40 years of age.
And I know that, I know how blessed I am,
that I have an abundance of blessings in my life,
so these reasons all drive me forward.
But I often think of the way in which
I first encountered Cystic Fibrosis,
in the person of an individual who needed
more to be known about their disease.
It was about trying to find answers
for those thousands of kids and young adults,
who were stricken with this disease
not of their own making,
but because the genetic dice had been thrown
in that particular way.
And who deserved the best and brightest minds
to try to come up with better answers.
And... there's still more to come.