Telling my story of what it's like to live with Ichthyosis and a visible difference. Loving life!
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01 April 2011
I have a dream.
My dream is this.
I want to establish a Changing Faces program in Australia. To break down the prejudices towards people with facial disfigurements + chronic illness/disabilities. And to give people with facial disfigurements + chronic illness/disabilities the confidence and pride to hold their head up high and smile.
"It’s not just about surgery.” Changing Faces is the leading UK charity that supports and represents people who have disfigurements to the face, hand or body from any cause.
We live in a culture where disfigurement is often seen as a medical “problem” that could/should be fixed by surgery or medical intervention. However, surgery alone cannot always remove a disfigurement and can sometimes lead to further complications. Changing Faces helps people to face the challenges of living with a disfigurement and equips them with the appropriate tools to build self-confidence and self-esteem.
First step is to get a group of people with different skills to help set it up. Maybe some professionals will help - see the Burns Unit at the RCH or the Fire Brigade (they help the Burns Unit) as they have had interest in disfigurement, contact the Law Insitute of Victoria or/and the Bar Council or/and PILCH to see if a lawyer with skills can set it up as a charity where you can get tax deductible donations to obtain funds, write to the relevant Victorian Minister to see if they will help, contact Women on Boards to see if they can put an ad in for you to get interested people. Hope this helps.
Once you get the idea a little more developed let me know and I'll mention it on my blog. Twitter and Facebook would also be great ways to spread the word. Maybe a large hospital in your capital city could endorse the idea, especially as there's been success overseas? If you're simply asking for support, rather than money, many organisations/individuals are more likely to come on board. And the media would love it once it's up and running!
This sounds like a brilliant organisation & something that would be really great in Australia.
A friend of mine help set up "Miracle Babies" in 2005 which is a support charity & group for babies that have to be in the NICU, they are huge now. I'm pretty sure they just started out offering support & help in their local hospital and it grew from there.
I could see if she can give you some info on how they got started if you like.
I'm 100% sure you began the day you started writing this blog!
Not to mention, you are a delightful friend to have. I honestly don't even think of your condition as disfigurement, your face is Carly's face and I like Carly!! By embracing your differences and educating through your writing you have already made a difference in my world xx
Someone above offered to help spread awareness by publishing a guest post by yourself, I think that is a fabulous idea and would love to participate in spreading awareness that way also!
anything I can do, let me know, ok? I might not be able to do it, but count me in to givea helping hand. Especially with press releases.
One thing you might like to think about, is to go to a charity you support, and ask for a mentor to help you as you work on setting up the charity. That way you'll get support and encouragement, and the skills you'll need to be a great mentor when it comes to be your turn.
Thank you for reading my blog. I love receiving comments :) I really appreciate the time you've taken to write to me, and to share something about yourself.
You've already started my lovely by posting this...you are truly amazing and inspiring xxxx
ReplyDeleteI'm not sure where you start, but if you want some help from the bottom of the country, I'll put my hand up.
ReplyDeleteFirst step is to get a group of people with different skills to help set it up. Maybe some professionals will help - see the Burns Unit at the RCH or the Fire Brigade (they help the Burns Unit) as they have had interest in disfigurement, contact the Law Insitute of Victoria or/and the Bar Council or/and PILCH to see if a lawyer with skills can set it up as a charity where you can get tax deductible donations to obtain funds, write to the relevant Victorian Minister to see if they will help, contact Women on Boards to see if they can put an ad in for you to get interested people. Hope this helps.
ReplyDeleteGreat idea, maybe contact the UK organisation to find out how they started out.
ReplyDeleteGo for it, Carly. I reckon if there's anyone who can organise this, it's you.
ReplyDeleteSounds like Anon has some great ideas to start with. xxx
I've no idea how you would do this, but there seems to be some good ideas in the comments above mine. Good Luck.
ReplyDeleteCongrats on the nominee girly:)
ReplyDeleteGreat idea, and anything is possible like Bono once said:)
Have a great Friday
Have you reached out to the UK steering committee?
ReplyDeleteThis is a beautiful idea....
That would be amazing! I would have no idea how to go about starting something like this, but I'd certainly want to help!
ReplyDeleteWould you like to write a guest post on my blog Carly? That might help to raise awareness a little bit :)
ReplyDeleteOnce you get the idea a little more developed let me know and I'll mention it on my blog. Twitter and Facebook would also be great ways to spread the word. Maybe a large hospital in your capital city could endorse the idea, especially as there's been success overseas? If you're simply asking for support, rather than money, many organisations/individuals are more likely to come on board. And the media would love it once it's up and running!
ReplyDeleteThis sounds like a brilliant organisation & something that would be really great in Australia.
ReplyDeleteA friend of mine help set up "Miracle Babies" in 2005 which is a support charity & group for babies that have to be in the NICU, they are huge now. I'm pretty sure they just started out offering support & help in their local hospital and it grew from there.
I could see if she can give you some info on how they got started if you like.
I'm 100% sure you began the day you started writing this blog!
ReplyDeleteNot to mention, you are a delightful friend to have. I honestly don't even think of your condition as disfigurement, your face is Carly's face and I like Carly!! By embracing your differences and educating through your writing you have already made a difference in my world xx
Someone above offered to help spread awareness by publishing a guest post by yourself, I think that is a fabulous idea and would love to participate in spreading awareness that way also!
Carly,
ReplyDeleteanything I can do, let me know, ok? I might not be able to do it, but count me in to givea helping hand. Especially with press releases.
One thing you might like to think about, is to go to a charity you support, and ask for a mentor to help you as you work on setting up the charity. That way you'll get support and encouragement, and the skills you'll need to be a great mentor when it comes to be your turn.
There is some really useful and introductory information on starting a charity organisation on the Philanthropy Australia website.
ReplyDeletehttp://www.philanthropy.org.au/index.html
Particularly here:
http://www.philanthropy.org.au/seekfund/charity.html