A is for Awareness

Our 65k 4 65 Roses walk finished just a few weeks ago and I have already gotten involved in another awareness activity for Cystic Fibrosis. People are going to start thinking that promoting CF is a favourite past time of mine! Well, believe me, it's not. So why dod I do it? Well, the obvious answer is because my youngest daughter has this disease. But that in itself is not the reason. There are a few other reasons why I pour my energy in making my community more CF aware.

One reason is, CF is a common disease that is not very well known. There are no major ad campaigns, no posters in shopping centres. It is not very well marketed. That sounds quite callous, I know. But the sad truth is, if you want to raise money and awareness for a cause, you have to sell it. I don't believe that this happens with CF. And why not? One baby every 4 days will be born with this disease. It has no cure. It is terminal. It is ruthless. It is everywhere.

The other reason is, awareness can lead to fundraising. The reason that most people with CF are now reaching adulthood is because of medical breakthroughs. Research into physio, medication, diet etc etc. But this doesn't come cheap. We are competing for your fundraising dollars and we want to show you exactly what you are buying us.

In Australia, Cystic Fibrosis is symbolised by a red rose.
www.cysticfibrosisaustralia.org.au

Which leads to my next reason. Awareness is a sign of hope. A cure for CF is a future possibility. Fingers, toes and everything else crossed! We are not a lost cause! We are a cause with a light at the end of the tunnel, we want you to join us on this journey, and help us reach that goal, and share in the joy of curing this disease.

And finally, for me, a burden shared is a burden halved. Well, maybe not halved, but I do find it therapeutic. And, at this stage of our lives, I have the ability to share, and blog, and Facebook nd the rest of it. I'm sure a time will come where I don't want to write anything about CF, or Ruby doesn't want me to. There will come a time where I simply don't have time, or the mental energy. But for now, I can so I will. And when I can't I'm confident there will be someone else affected by CF doing it instead. We all take our turn.

So for the next 25 days, we will be bringing you The A-Z of Cystic Fibrosis. Today, for the letter A I have chosen AWARENESS so I'm going to leave you with some awareness campaigns from around the world. Because all over the world, we need a cure.

Eva's story is one of love and hope. Her journey of sickness and transplant was filmed and documented. You can learn more about Eva at www.65redroses.com

Cystic Fibrosis is also known as 65 Roses, due to young children not being able to pronounce it properly. The Wolverines have a famous song "65 Roses". It's very touching and explains a lot about having someone in the family with 65 roses.

TV Commercial for Cystic Fibrosis NZ, filmed entirely underwater - no computer tricks - all real, using NZ champion free divers. 

Dear Blog

Dear Blog, 

Sorry I haven't written here for a while...the world has been finding things for me to do lately. I promise I will return and offload all of the things going on in my mind when the universe slows down just a tiny bit. I am at the end stages of the Team Ruby auction (still trying to buy my baby a cure), another side project that just seemed to snowball into something amazing. Once again I have under-estimated the compassion and generosity that people have shown us. It makes me wonder what we have done to deserve this wonderful support, instead of letting me wonder why we deserved to have CF in our lives at all.

Ruby has been waking with severe tummy pains throughout the night so I have been tired, even too tired to come and visit you. I haven't had a good entry in a while. I know I posted many times in May for 31 Days of May, the Cystic Fibrosis Way but they were more for awareness purposes, not lightening my emotional load.

So thanks for waiting for me...

31 Days of May - The Cystic Fibrosis Way!

This is a great idea that a fellow CF mum had to raise real awareness as to what goes on in a month of a CF family. We have chosen the month of May as it is international awareness month.

Everyday I am going to post something about Cystic Fibrosis  

Everyday you will find out something new about CF and how it affects our family and my child's life

Some topics won't be relevant to us...yet

We are one of many families who go through this, I will also be sharing their experiences with you

love and kisses to you all!

65 Roses Day

You have heard me go on before about what I believe is the lack of awareness about CF in Australia. It sometimes keeps me awake at night, probably more than it should.

Well, good timing for me, May is the official Cystic Fibrosis awareness month! Fri 27th May is 65 Roses Day 

My plan is to purge all of my awareness urges. I will focus on putting it out there for all to see. Hopefully once May is over, I can feel good about educating people about this disease, and I will be able to sleep better at night. 


And I am starting with you, my blog readers

So here are some things you can do

 Learn about this genetic disease and how it affects its sufferers. You can do this by checking out these links:

 Informative blog entries

Cystic Fibrosis Australia

If you have any questions at all about how CF affects our family, please leave a comment and I will tell you the answer, guts and all.

Use Facebook! Join Team Ruby so you can see what is going on and learn about CF and how it affects just one of its sufferers. 

Change your profile picture to a CF awareness picture (these can be found on the Team Ruby page). Write a status update as to why you are doing it. This may seem like a bit of a token effort, but it has been proven to be a very effective awareness tool. You will be helping spread the word.

Invite your friends to join Team Ruby

You could sell 65 ROSES DAY MERCHANDISE. See if your employer will buy one for your place of work. Hint that it would be a great tax deduction! Volunteer to sell them at train stations. Check out the 65 Roses website for more info.

Share Share Share

Share links, pictures, CF pages. 

Sharing is caring, and I know that you all care!

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. 

Team Ruby

Well our day has been and gone. I'm sure everyone by now has heard me rave on about how touched and blown way I was with the amount of support and love that we received, so I won't write about the day. Instead, I have made a montage! Don't worry, it's not too emotional and not too long. But a picture tells a thousand words, so here you are...




Our fundraising so far is $14250 with more on it's way. Half the money goes to our CF clinic at Westmead hospital, the other half to CF NSW. It's not too late to donate if you haven't already!

DONATE TO TEAM RUBY


***if you have more pics, send them to me! There are team members I am missing***

Bee in my Bonnett

Yes, I officially have a bee in my bonnett.

As a family, we have entered our first CF fundraiser/awareness event. We have entered a team in the 65k 4 65 Roses Walkathon. We are Team Ruby.

On the 5th of March Craig and other team members will be walking 65k in one day to raise money for the CF Clinic at Westmead Hospital and for CFNSW 

I feel like I am doing something. I have a goal, a purpose. I'm raising money to save my daughters life. I know that sounds melodramatic, but lets look at the facts. Let's look past her happy personality and beautiful smile and see whats inside. You would see a set of lungs full of mucus, ready to hold onto and breed bacteria, turning it into an infection, resulting in scar tissue. You would see a pancreas that doesn't work as it is too clogged up of that same mucus. You would see a re-sectioned bowel. You would see that same mucus again in the ovaries, stopping the release of eggs, leading to infertility.

Sometimes it's hard to compredend what is going on inside, when outside she is just so perfect.

But I'm getting off track here. Back to my bee. I've been buzzing around like mad, promoting our team and organising fundraising. This is so important to me that I sometimes have to take a step back and remember that not everyone has a child with CF. Not everyone feels as strongly about this as me. I have this sense of urgency about me and I don't really understand it. All I know is that money will cure Ruby's disease. I wish it wasn't like that but it is. The CF gene has been identified and has been cloned and "cured", but not permanently. They are so close to finding a cure , money pays for results, as simple as that.

I have had a few tears leak out during Team Rubys existance. The faith that I had lost in the universe (without really realising) is coming back. I have amazing friends. Hell, I even have amazing aquaintances! The amount of people that have helped us is just heart warming, it really is. Here are some amazing things that are happening for us:

My yoga teacher is donating a whole mornings takings to Team Ruby
My friend Shirley is donating 10% of her Avon sales to Team Ruby
My Tupperware lady is donating 20% of sales to Team Ruby
Our family friend Mel is walking the walk, but is also helping in a million and one other other ways, even though she is a mum and works full time
My friend Laura is giving away 3 remedial massages for us
My mothers group let me use them as an outlet, they are my best friends and I love them all
My cousin Michelle donated a manicure for us to use as a prize
My friend Caz is donating a family photography sitting to one lucky donor
My friend Anita has asked that no presents be bought for her sons birthday, just donations to Team Ruby

So, please help us out if you can! You can donate here:
www.mycause.com.au/teamruby 

And join our Facebook page here:
www.facebook.com/teamruby 

This will be our one major fundraising effort for the year

Thankyou.