How AAAF Began – 10 Years On

AAAF Launch Photos 2011 Photo 7By Chel, AAAF Founder and President

I am often asked why I wanted to create AAAF ten years ago.

It wasn’t that I wanted to create AAAF; it was more that I saw a need to have a unified body that supported everyone who had some form of Alopecia Areata.  The support group that I had been a member of didn’t align with my ideals of how to get Alopecia Areata known in the wider community. I had the hope that one day there would be unconditional acceptance on someone’s appearance.

My son’s appearance changed dramatically by the time he was two.  Try and think back twenty-one years ago, the comb-over for males was the fashion. So having a toddler with patchy hair did bring on the stares and, yes, the questions.

We started our journey with little to no information and nothing focused on a child’s journey with Alopecia Areata.  To help Ryan integrate into school, I took it upon myself to create visuals and information flyers on what Alopecia Areata was.  Each year we would talk to his class and the wider school community and eventually, we found the questions stopped being asked to the point we stopped holding the sessions.  This information that I collected would eventually be turned into many of our support material on offer today.

So I guess back 20 years ago, without even intending so, I was already heading down the path to become dedicated to a life of Alopecia.

So what was my turning point?

Although this is going to sound harsh to some readers, and I apologise upfront, I was truly sick off everyone covering up their bald spots, being ashamed to be themselves, being anxious if someone found out they had hair loss. Most of all, I objected to the statement I often heard, that “Ryan is a teen, he’s almost at that age that he’ll be accepted as a bald man in society, so why bother?”.

I bothered because a change was needed.

I bothered because of the unnecessary shame, anxiety and embarrassment experienced by people with diverse appearances. 

I bothered because no other child and no parent needed to go it alone.

So in late 2009, I sat down and wrote a list of the pros and cons of creating a foundation for people and families dealing with AA. This year, as we celebrate our 10th anniversary, I have gone back to the AAAF establishment plan and found these original notes.

Positives:

  • The need is there
  • New ideas, new way forward, need to be seen to be heard
  • Consolidate administration costs (remove overheads of having multiple independent support groups)
  • Established AA networks in larger states – platform to build upon
  • Opportunity to Centralise AA messaging
    • Focused Mission
    • Structured, consistent theme
    • Create support materials for the AA person
  • One Web site
  • Alignment to Specialists, I.e. Dermatologists, Psychologists, Wig makers, AA product suppliers, Hairdressers
  • develop campaigns (ideally self-funding)

Challenges:

  • Zero capital
  • Establishing AAAF – Setup – 5-year goal setting
  • No idea how to run a foundation
  • Need acceptance from existing support groups to join AAAF
    • fall back model if no support gained?
  • Agreement on AAAF structure, operation model, Mission Statement, Logo
  • Current support groups owners are tired, lack continuation
  • No ongoing funding
  • Build on individuals skillsets to occupy committee/board/state manager roles
  • Initial AAAF members  – who?
  • Personal impact on my family
  • Need to commit until a successor

Looking back on all the challenges, I wonder why I proceeded. Reflecting back on the children and families supported, the research conducted, the awareness raised, I’m glad we did.

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