Please help raise awareness for Cystic Fibrosis!

[Trouble]

Hey guys,

I am writing this to ask for your help in raising awareness on Cystic Fibrosis (CF)
Cystic Fibrosis, a genetic lung disorder, affects 1 in 2500 babies in Australia every year. Unfortunately, CF Qld has recently lost all their government funding and public donations because of the recent natural disasters. CFQ only received 6% government funding in the first place. They have to try and support over 1000+ patients every year suffering from this disorder.

Recently a friend of mine made a video to show how hard it is from the start, in a family not with only a husband with CF, also a young son.

YouTube - Olivers Journey
http://www.youtube.com/watch?v=Twjg7v-pTO4 < this video explains alot more about CF than I could ever think of writing!! please watch

Please, please help me, and the rest of the CF community, raise awareness, so we can get the support we desperately need.
Sorry if I seem pushy I am just hoping we can get enough info out there to get people to notice this is almost as bad as cancer etc. and we don't have a cure.

Tameah.

 

[Wookie]

Hey guys,

I am writing this to ask for your help in raising awareness on Cystic Fibrosis (CF)
Cystic Fibrosis, a genetic lung disorder, affects 1 in 2500 babies in Australia every year. Unfortunately, CF Qld has recently lost all their government funding and public donations because of the recent natural disasters. CFQ only received 6% government funding in the first place. They have to try and support over 1000+ patients every year suffering from this disorder.

Recently a friend of mine made a video to show how hard it is from the start, in a family not with only a husband with CF, also a young son.

YouTube - Olivers Journey

Please, please help me, and the rest of the CF community, raise awareness, so we can get the support we desperately need.
Sorry if I seem pushy I am just hoping we can get enough info out there to get people to notice this is almost as bad as cancer etc. and we don't have a cure.

Tameah.

I wrote an assignment on CF last year. Terrible disease.

 

[Danger_Mouse]

You know I'll help Tameah

 

[saximus]

I watched a very close friend go through it. He was the strongest person I've ever known. It's a terrible thing for anyone to go through. Good luck raising awareness Tameah. Do you have the 65km walk up here?

 

[Trouble]

I wrote an assignment on CF last year. Terrible disease.

Ohh wow, Wookie, yeah it is a terrible disease. Alot of people are unaware how bad it can be. I hope you passed your assignment
I did an assignment on it a few years back, but the teacher only gave me a C on it only because it was late in, because I was in hospital -.-

You know I'll help Tameah

Thank you, Ben I knew I could rely on you

I watched a very close friend go through it. He was the strongest person I've ever known. It's a terrible thing for anyone to go through. Good luck raising awareness Tameah. Do you have the 65km walk up here?

that would be a hard thing to do, Saximus, watching your friend go through it. Good on you for being there for them it definitely helps. I know I am very thankful for the strong family I have around me, and my close friends who have never let me down.
Yeah, we do have the 65km walk up here, but I can not recall when ours is at the moment. I think it's later in the year. I know a few of my mates will be doing it. My lungs just can't hold up for it.

 

[Wild~Touch]

Hey Tameah
Do you have any info I can put on the HSQ table at the Bird Expo RNA Showgrounds....next Sunday. Huge exposure there
Would love to help CF people
Cheers
Sandee

 

[Trouble]

Hey Sandee

I will get some info together for you, that would be awesome! thanks heaps xx

 

[Wild~Touch]

Hope you can get to this Bird Expo.
A good theme would be Reptiles don't afffect CF people. As I would imagine mammal fur would.

Keep at it girl

 

[myusername]

Trouble, do you know the Crew family by any chance?

 

[euphorion]

Hope you can get to this Bird Expo.
A good theme would be Reptiles don't afffect CF people. As I would imagine mammal fur would.

Keep at it girl

Why would individuals with CF be affected by the fur of mammals? We've got cats, dogs, birds and reptiles here, no problems. I only ask the question because i think you might find doing some research into the condition very interesting as different organisms affect those with CF differently to those without. Animal allergies aren't really something of a problem.

 

[Trouble]

Hope you can get to this Bird Expo.
A good theme would be Reptiles don't afffect CF people. As I would imagine mammal fur would.

Keep at it girl

thanks Sandee!
Yeah, different fur does affect individual CF's in different ways. I can keep a dog, and we use to have a cat, but a couple of my mates can't, it's very weird.
I know that birds are a 'no no' especially after a lung transplant!

Trouble, do you know the Crew family by any chance?

Hi
No, unfortunately I don't. Do you know which hospital they attend? I know some CF's can't mingle because of the different genetic 'bugs' etc.

Why would individuals with CF be affected by the fur of mammals? We've got cats, dogs, birds and reptiles here, no problems. I only ask the question because i think you might find doing some research into the condition very interesting as different organisms affect those with CF differently to those without. Animal allergies aren't really something of a problem.

Shooshoo, I agree with you, partly. as I said to Sandee, it affects different CF's in different ways. Unfortunately we can't keep birds because of the different bacteria in their fethers etc. and I know that some can't clean up after a mamal or even be near them because of how it affects their chest. I, personally, don't know why it affects them in this way, but I will ask the doctors next time I'm in hospital

 

[myusername]

Oh I was just interested, I know the family well and the dad was the president of Cystic Fibrosis Queensland for four years (a few years ago now).
Good luck with everything.

 

[euphorion]

Hmm, that's interesting Trouble. My partner has CF and he has had pet horses and rabbits, has birds, dogs and cats and it has never caused a problem. I know i have very little understanding of the specifics of the condition so my appologies if i caused any offence. Being that there are many degrees of severity of CF i wonder if it is also the case that, say in the lungs specifically, different forms of the condition carry inherant resistance or susceptability to organisms specific to different animals? Or is that just so obvious that i just made myself sound like an idiot for only just figuring that out? Hmm... :/ silly me!

On another note, our doctor is so FAIL. We have to get a prescription filled each week on the same day otherwise things get nasty and our doctor regularly forgets such that we actually call the day BEFORE to ensure he has written the prescription, then on the day to ensure the script is filled and ask for a callback for when its ready to collect. Nothing happens, call the next day, Oh, no presciption and he's NOT AT WORK. ***.

 

[Trouble]

Ohh okay, that might've been a few years before I started getting involved with CFQ But, in saying that, I usually only deal with the social workers, not the actual CEO.

Ohh wow, Shoo. If you don't mind me asking, what's his name? and which hospital does he go to?
Don't apologise, there are several different affects to everyone. Some hardly have to come into hospital at all, yet some go in every 2-4 weeks for 3 weeks at a time :s

Being that there are many degrees of severity of CF i wonder if it is also the case that, say in the lungs specifically, different forms of the condition carry inherant resistance or susceptability to organisms specific to different animals?

Honestly, I have never thought about it ... but, now that you say that, it sort of makes sense. and maybe that could be part of it ... hmm, I shall ask

haha yeah, sometimes the doctors are a bit FAIL lol. I know the residents & registrars at hospital are a bit useless sometimes, because they always go by the book, but I've never had problems like that :/ do you go to a GP? he sounds a bit difficult to deal with, hey.