WA Boys Weekend Recap

Eagle Bay Boys Weekend 16-18 March

In March 2018, AAAF ran our first event just for boys with Alopecia Areata – a weekend camp in WA. Hosted by Greg O’Rourke, the WA AAAF Branch Manager, at his holiday home in Eagle Bay, three hours south of Perth, the camp was attended by six boys aged nine to fourteen.

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(Left to Right: Greg, James, Cam, Carlo)

Some of their parents also attended, along with other members of the AAAF team – Support Ambassadors James Miller and Cam O’Rourke  and Carlo Napolitano. Carlo and James flew in from Sydney on the Friday evening especially for this camp.

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AAAdventure Camp 2017

By AAAF President, Chel Campbell

The AAAdventure Camp held during Alopecia Awareness Week was our first attempt at hosting an event for kids from across the nation. It was designed to bring children together from all around Australia to have fun, build friendships and to remove the question on being the only person with Alopecia Areata.  Many of the children had never met another person with Alopecia and the camp a great way in a non-confronting environment to remove this barrier.

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Announcing Kokoda18

In August 2017, two amazing members of our community, Greg and Tracey, headed to Papua New Guinea to tackle the famous Kokoda Track. This gruelling seven day journey took them through 98km of beautiful and harsh tropical landscape and profound history, as they followed in the footsteps of the ANZACs.

Kokoda17 aimed to champion awareness of Alopecia Areata and to raise much needed funds towards research into this condition. The team raised over $12,000 to support individuals and families whose lives have been changed by Alopecia Areata.

In March 2018, a second team is taking up this challenge, and you’re invited too! Kokoda18 is now recruiting!

Andy, whose wife Amanda has Alopecia Areata, is tackling the Kokoda Trail in March 2018 and we’re looking to recruit fearless adventurers to join him on this journey of a lifetime.

If pushing your boundaries to help support people in need sounds like a challenge you’d be winning to champion, get in touch with us at greg@aaaf.org.au to find out more about being part of the Kokoda18 team. 

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Ask the Experts – Young Adult Perspectives

As you may be aware, earlier this year AAAF was able to send two of our team as representatives to the National Alopecia Areata Foundation Annual Conference in Miami, Florida.

We’ve been able to bring back some fantastic ideas for new projects to bring our community here in Australia, some great information from the Ask the Experts session (find it here), and now are excited to be able to share from a session on a young adults perspectives on living with alopecia.

This session was hosted by an amazing panel of individuals in their early 20’s who have lived with alopecia through their childhood and teens. Individuals in the audience, most of them parents of kids with alopecia themselves, were able to ask questions and seek information based on the panels personal experience.

It was fantastic to see this exchange of information and perspective, but it was also really amazing how many of the questions that were asked were the same as those we receive daily at AAAF. In order to bring the amazing experience of being at the conference with over 600 other people with alopecia, we’ve taken extensive notes from this expert panel to bring to you.

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Kokoda17 – Greg’s Story

Greg is AAAF’s Branch Manager in Western Australia. Over his many years with AAAF, he’s been a driven and passionate champion of Alopecia Awareness and support for people living with the condition.
His latest project, Kokoda17, is an awareness and fundraising challenge for himself and a team of other dedicated individuals from our community. On Sunday the 13th of August, they begin the journey of a lifetime – tacking the Kokoda Trail in Papua New Guinea. They’re taking on this 97km of rough terrain and poignant history to help improve the lives of people living with Alopecia Areata.

Already this amazing crew had met their first fundraising goal of $10,000 toward support and research into alopecia. They hope to reach the $15,000 mark before they return from this grueling trip. You can help them help kids and families living with alopecia by donating here.

We sat down with Greg during his preparation for this impressive journey, to discuss what inspired the idea and why he took up the challenge.

Continue reading “Kokoda17 – Greg’s Story”

Shea on Alopecia Treatments

“It has taken me a really long time to be okay with alopecia being a part of my life. But I still have days when I hate it. When my wig doesn’t go on properly or my eyebrows don’t go on properly or I just want to be like everybody else, to be able to just chuck my hair into a ponytail.”

Shea is one of AAAF’s Support Ambassadors. Here she shares her experiences with treatments for Alopecia Areata and her own personal journey with this condition.

 

*Keep in mind that this video contains some non-graphic discussion of medical procedures. Viewer discretion is advised.

 

The Tropical Challenge – Beating the Heat while living with Alopecia

alopecia-and-hot-weather-author-linseyBy Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

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Bald Girl in the Dating World

A reflection of my journey, a bald girl in the dating world.

I am Bianca and I’m 41 and single.
Some time ago I shaved my head and started living my life as a bald woman with Alopecia. The grieving that followed that was indescribable.

Over here in my bubble I assumed I was no longer feminine, I felt ugly.

I looked in the mirror and was mortified at what was looking back at me, I no longer knew who I was. The image I had known as “me” for as long as I can remember was gone and something very different, something very confronting stared back at me. When I went out to bars and clubs, men and women stared at me, in fact whenever I left the house people stared at me. Continue reading “Bald Girl in the Dating World”

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