Sunday, 19 May 2013

Strands goes live and we speak to Chel from the Australian Alopecia Aerata Foundation

So, it's been a while. I admit it; I've been slack. This year feels like it's gotten away from me somehow, and now it's almost halfway through. Mind-boggling.

What's even more mind-boggling is that All Of The Strands is now finally completed and ready for download! This was a project which required a lot more time and attention than I had originally assumed, and it's times like this I am glad that it was mostly not my time, but Pat's, because of his dual curse of amazing love of audio production and crazy perfectionist streak.

If you aren't aware of where this started, you can read these two posts. Rarely do projects come along that strike me so personally, and the odd thing about it is that I didn't even know anyone with alopecia aerata before I came across the Turning Heads project from Helen Beasley and Lina Hayes. I do love the power of images- that a couple of photos could create such a strong emotion as to elicit an emotional and creative response (courtesy of Lina's amazing photography and Helen's vivid art). Strands, in particular, was influenced by two images which were juxtapositions: the picture of little Violet, with her doll and its raggedy hair, and Stacy in the autumn leaves, which took the condition and instead turned it in an opportunity for even more vibrancy and life than a head with hair could manage. It kind of said "the hair's just a distraction from me" and I liked that.

Violet and her doll- photograph courtesy of Lina Hayes

Stacy in the leaves- Photograph courtesy of Lina Hays

It came down to a toss-up between the two and votes were split evenly, both amongst the band and the Alopecia Aerata Foundation. Then Stacy beat me at Words With Friends and it became clear that only Violet could be the winner. Also, the sheer amount of colour made hers hard to read. Really, just the last one. I'm not bitter about losing. Or am I?
Sorry, Stacy. It was totally close though. If the text didn't look like it was saying "Ali Of The Strands" it'd have been a dead heat. Or a famous boxer.

So Strands is now live. And any money you give to the track will be given straight to the Alopecia Aerata Foundation.
You heard me. All of it. It's digital so it's cost us nothing but time to produce, and given there's just about no funding for research going into this condition, it's a small way we can help.

Now, I'm not deluded. This isn't going to have a million downloads and fund a cure, as amazing as that would be. But it's a way of starting, at least, and I invite you to join us. You get a song that I think is pretty. They get some cash to keep doing what they do. It's win/win! You can even pick how much to pay. You can buy one for a friend. Or many friends. Or you can share a link, or tweet, or something else internet-based.

With that being said, the purpose of the song is not to apply only to sufferers of alopecia aerata. Rather, its intention is to serve as a reminder that there are things upon which we place value disproportionate to their worth, where the critical areas of importance- our very character- are often ignored at a superficial glance. Sometimes it's important to be reminded to go back and look again, however harrowing it will be to admit that the first glance was superficial.

As a Christian, this reminded me of 1 Samuel 16:7- "Do not look on his appearance or on the height of his stature... man looks at the outward appearance, but the Lord looks on the heart." A reminder of my own inclination to make snap judgements, amongst other things. That someone with alopecia would ask "Will I ever be loved" caught me; for surely, someone could see that same spark and vibrancy captured in these photos with or without hair, right?

I reached out to Chel Campbell, the President of the Australian Alopecia Aerata Foundation, to get a bit more of an insight into who they are, what they do, and why what they do is important.

Hi, Chel. How did the AAAF start, and what is your role?
The AAAF was started on the 1st January 2010, to be the national body within Australia. My roles is the President.

What sorts of things to people find hardest about having Alopecia Aerata?
That depends on the age of the person and the age the person first experiences hair loss. But I would say the most common answer is: people always staring, having to explain that you're not sick (ie. don't have cancer), closely followed by acceptance of their self image, the not knowing if your hair will ever grow back, and the fact that no-one can give you an answer as to why it happens.

The most common questions into the foundation: will my hair ever grow back? Will I get a job? Will I ever be loved? Will I ever be me again?

What is the purpose of the Foundation?
Our goals are to support existing support groups, provide funding into emotional and medical research and promote awareness of the disease.

How can people help?
Help can come on many forms. You can attend any of our events to show support. You can donate money or hair. We run a Donate Hair program, where we request natural hair of 30cm in length or greater to be donated. We sell this hair to wig makers and all money made goes back into our Wigs For Kids program. This program offers the information required to make an informed decision if getting a wig is right for that child, and then what sort of wig. The greatest support comes by spreading the word. Understanding what Alopecia Aerata is, and discussing this with your peers, may just remove the questions and curiosity surround the disease that can make it so difficult for people with the disease.

Redwoods will be hosting an evening of music soon, with some of our favourite bands, as a fundraiser. More information will be coming, but we would love you to join us if you agree that there is value- and love- that does not require a given requisite appearance, but looks at the heart. I hope to see you there.

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