Sunday, April 3, 2011

I am sitting here surfing the net (instead of cleaning the saucepan cupboard) looking at CF stuff. The fundraising and awareness part of CF I mean. And I am getting angrier and angrier and ANGRIER.

It's pretty poor really, the CF website is out of date by about a year, the links in it are also out of date (ie Great Strides info) and really, there doesn't seem to be much going on.

CF families, are we living in a CF bubble where only our friend know about this disease? This is not some weird quirky thing that only some people get!!! It seems that if you don't know someone with CF, then it doesn't exist!

I have only been in this CF bubble for 8 months. I had no idea about it a day before that. Why not? I should have. Every one should!

Everyone should know that one in 25 people is a CARRIER for this DISEASE. Everyone should know that one baby every 4 DAYS will be BORN with this DISEASE. Everyone should know that TRANSPLANT and DEATH before turning 37 is not a possibility, but is practically a STATISTIC! 

Excuse me, but where are that ads on TV? Anyone ever remember seeing one? There is a beautiful one for MS out at the moment. It breaks my heart, I want to give them my money. The autism one also gets me every time. Kids cancer awareness...well we all know how successful they are.

CF kids look healthy, BUT THEY ARE NOT!

65k 4  65 roses raised a LOT of money. I thought it was a starting point but it looks like the high point.

So I am angry. And I will continue to be angry until there is more done for our kids. I will do it myself if I fucking have to.

Now I'm pressing publish before I calm down. 


5th April
OK, so I have calmed down now and thought I should clear some things up before I get myself booted out of the CF community!   And also to correct my spelling mistakes. I just get frustrated and although Ruby is healthy at them moment, I have a real sense of urgency to get more support. I get frustrated when things aren't up to date eg I wanted info on buying an Entertainment Book as I know that is a good fundraiser for CFA. The webpage has not been updated since 2009, even though they are selling books for 10/11. This is just one fussy example. There are lots of others. 
There are many successful fundraisers that are organised by the CFA, I will do a separate blog entry on what is coming up.
And then there are the amazing parents and community members who organise their own fundraisers. People organising events in their own time to raise thousands and thousands of dollars.  65k for 65 Roses is a great example, raising around $140,000. I honestly though that this was the norm, but it is not.

So I'm sorry if I offended anyone. I know for a fact that the CF community is a strong, loving, supporting community who want what's best for the people and families living with CF in Australia. I know that the people working for CF Australia work really hard and are 100% committed. I know I sound like a new comer who doesn't know what she is on about. I just want more.

I want to help. 


Georgie said...

Danni, I dont think there is any need for you to apologise. Im sure any family living with CF, no doubt, go through the exact thoughts & feelings all the time BUT DONT say anything. This may be just be the true unveiling of your's & Ruby's destinies - to be the true advocates for this awful disease. Its a sucky one, bu it does need to have the public awareness, it does need more funding & it does need a cure. You CAN be the passionate, wonderfully strong woman needed to do this. George :)

Anonymous said...

Your discoveries are at the least frustrating & to have a family member as close to you as Ruby with CF, I imagine it's tormenting. Until meeting your family I've never known personally, someone with CF. But I did know of it, what it was, how it happened, perhaps from a personal interest in biology & human disease and then later studies in genetics. What I was & still am, completely naive to is what it means to someone who lives with it day to day. My brothers friend, in his 20's has CF. He is doing well, more so since a lung transplant in his teens that nearly came too late, but with that comes anti rejection drugs for life & still the physical limitations of his CF. What I also didn't realise is how high the incidence of carriers is, that's huge, you can only imagine how many near hits are out there in families who've unwittingly dodged the 1 in 4 possibility, hell mine could be one of them. Perhaps if I'd had an appreciation of this I would have embarked on some genetic counselling/investigation before jumping into family life, or would I? That's what I'd like to know, is there even testing available to find out if you're a carrier? Or if you're the healthy child of a carrier? If you & your partner both are what options are out there besides an educated leap of faith & hope that your kids will avoid it? Maybe $ also needs to be invested in gene selection techniques which over generations would eradicate it from the gene pool. There are so many diseases like this. I have a niece & nephew with PKU, same 25% odds with two carrier parents, of being affected. Its rarer than CF & fortunately can be controlled through diet & life medication, but if its not the consequences are life threatening. I understand genetic selection raises the whole ethics debate but we're talking about sparing someone a debilitating disease, not choosing their eye colour. Hypothetically speaking I'd choose to use these options if they were available & affordable and quite likely intervene if necessary for my circumstances. Is it that different to IVF providing possibility to infertile couples? I think the best people to ask are families like yours who have the experience of hindsight. It goes without saying having had Ruby you wouldn't give her up for the world, but has having had a child with CF changed your ideas on having more children or not? If she'd been your first born would that have made any difference? I'm not asking you to necessarily answer, here probably isn't the right forum anyway nor is it my business, but these are the types of questions that would help decide whether this would be a worthwhile avenue to fund. Then of course educating the breeding population on the statistics would motivate all of us to support the advance of research in this direction also. As they say, prevention is better than a cure.

Danni said...

You have heaps of interesting points Sandy! As it happens, we have an appointment with the genetic councellor tomorrow so I'm sure my next entry will cover that side of things. FYI, you can get tested for CF via a blood test, and you can also get your foetus tested during pregnancy. But as you mentioned, that brings about so many other questions, options, decisions and moral reasoning.
I have always been interested in my family tree, as well as genetic traits, I wish it wasn't so relevant to me now! Thanks for your comment, you have given me lots to think about for my next entry :-)

Oh Gorgeous Baby said...

Danni, I have learnt about CF via your blog. I also learnt a little about it a few years back when a blog I followed had a Mummy suffering from CF and who was pregnant.

There are millions of people out there who feel as passionately as you do. It just they feel the same way about lots of different conditions people don't know about.
I had these same thoughts when it came to Prematurity, Pre Eclampsia, HELLP Syndrome and Transplants. All of this I have experienced in my own life in one way or another.

I know before I had PE and HELLPS I knew nothing about it. The fact that it affects 1 in 10 pregnancies and can cause very serious complications and even death (yes it is that serious) for Mum and baby then why isn't every pregnant woman and her partner told? Most people don't even know what the signs and symptoms are either. Yes you can get a flyer on listeria when you are pregnant but not PE?

I worked with Not For Profits like Australian Action On Pre Eclampsia and we had our own community service announcement made to raise awareness. This cost thousands of dollars and took a lot of time to put together. Then once we made it I actually called every single TV station in Australia and begged them to put it on.Everyone who is in that NFP is either a survivor or a family member of someone who suffered from PE and HELLPS. All funds had to be raised and we all had to give our time for free to raise awareness. I want to know why this happens so if it is genetic I can tell my kids...sadly they are still trying to figure out why?

I also felt the same way when my Mum had a kidney transplant and learnt much about how little donations are made.

I suppose the point I am trying to raise is everyone is touched by different things and everyone is passionate about different things too.

You will find that in these communities it will generally be the same people who step up and offer help to fundraise, support and raise awareness. Someone people never think to and others feel like they can't.

I would contact the website and ask why it hasn't been updated for so long? It could be that they don't have someone to collate the content to get it online. They may need someone to actually edit it and get it online etc. Offer to help if you can or find a business who will donate their time to do it for a banner on a page to say thank you for their support.

Anonymous you had some really good points in your message too. Danni I look forward to seeing what you write next.

Oh Gorgeous Baby said...

Oh and I forgot to say that in these communities the ones that often give and do a lot get tired too, they have their own things going on and sometimes others have gotta step up. I did this for years after Airlie was born and you can only do it for so long before YOU crash in a heap.

The website you are talking about, is it a paid org or a not for profit org?