While May is Cystic Fibrosis Awareness Month, 65 Roses Day is the biggest day of the year to raise money and awareness for the most common recessive genetic condition in Australia, probably the world.
From things I have seen online, it looks like 2012 is going to be the most successful year for raising money, ever!
While my own fundraiser doesn’t start until tomorrow, it has still be a busy day for me. I organised my children’s school to have a Red Dress day with a gold coin donation. I don’t know how much they raised, but there was a massive sea of red when we arrived at the school gates this morning!
My eldest son and daughter certainly got into the spirit of things, with spray-dyed hair, red pants and a white shirt that I had painted red lungs on to (my daughter also wore a 1920’s style headband with a red feather) My son was pulled out of class to have a photo taken at the office. At this point, I am unsure if it was for the school newsletter or for the local paper. Either way, I am glad that they made such an effort to raise awareness (with pamphlets and an educational video making the rounds of the classes)
We are all organised for our sausage sizzle tomorrow, with my mum making all the effort tonight to cut the onions. At least she has a nifty little device to slice them to prevent tears!
Our raffle has already been underway for a week. We havent sold many tickets yet, but we are sure to get plenty of sales tomorrow. We also have a “Guess the lucky number” raffle going, along with merchandise sent to us from the CF Association.
The local support has been amazing, as we have had nearly $1,300 worth of products donated for our raffles! A lot of local businesses have organised sizeable donations as well.
While it’s great that money and awareness is being raised towards cystic fibrosis, it can also be an emotional day for those living with CF on a day-to-day basis. Another CF mum mentioned this morning that the day makes her feel a little sad. I didn’t agree at first, but by this evening, I am now inclined to agree.
I love the fact that money and awareness is being raised about something that has such a major impact in our lives. But with all the information that gets advertised on a day like today, it really brings reality of the situation home to us.
CF treatments and health effects are just daily life for us. You forget what the impact is. To watch videos, or read articles, it reminds you how bleak it could be. While the feelings aren’t as strong as at the time of diagnosis, you are reminded that this is something that shortens life expectancy, causes major drama, even pain. So many can’t wait for the bubble of ignorance to return.
CF families are put under the microscope for everyone to see. It can be intimidating, even intrusive. I know I shouldnt complain, because in order to raise awareness, you have to raise your hand and say “Look at us! We are dealing with it!” , but when you want money for an organisation that does so much to help you, or even want a cure, you have to do these things.
I am very proud to be doing what I am doing. God knows I have probably bored (even pissed people off!) with my vocalisation, but you know what? This is who I am. I am not one to sit quietly in the corner and allow things to go unnoticed.
But in saying that, I will be glad when this weekend is over. I have been busting my little (ok, large!) backside for the last three months to get this fundraiser off the ground. I am over talking about cystic fibrosis for a while (is that sighs of relief I can hear out there!?!?!) I want to have time and energy to write on my blog again! So you will probably end up hearing about Global Development Delay (the other drama in our lives) or some other mindless dribble for a while.
I need rest. It’s going to be a loooooong day tomorrow!
Wish us luck (or better yet…donate online at http://www.everydayhero.com.au/belinda_giovanazzi !)