Sunday, February 19, 2012


On Friday a co-worker handed me a packet for the NAAFC (The National Alopecia Areata Foundation Conference) that will be held in Washington D.C. this year. I have never been to one of these conferences and my co-worker (who has a son with Alopecia) has been telling me how wonderful and supportive these conferences are. For the past few weeks I have been considering the trip. It would be nice to take a family vacation to Washington D.C. Neither Joe nor I have been there, and it would be nice to meet some people who I can relate to in the Alopecia sense.
When I got up this morning I remembered the packet and took it out of my bag to look it over, in preparation for a discussion about the benefits of going with my husband. The first few pages are what you would expect: a page explaining who the NAAF is and what they do, an itinerary for the weekend of the conference, conference highlights, guest speakers, etc., but right in the middle of the packet is the page that shocked me. This page is titled 'Conference Registration Form'. Now, I knew ahead of time that there would probably be some sort of fee to get in. They have to pay for the conference some how. But as I looked at the fees, I was appalled!
It would cost $210 for me, $170 for my husband, and (thankfully) my son would be free. This is if I were to register before June. Otherwise it would be $520 for me and $240 for the hubby. So, best case scenario- $380 just to get in the conference, worst case- $760! This is not counting airfare, hotel, food and anything else we would need to do to get/stay there.
Is it just me, or is this completely ridiculous?! I wanted to go for support for a disease, and for my son to meet other people like me, just in case he ends up having it as well. But apparently, support costs a lot of money these days! I am fed up with the "support" we get. "We support you in your baldness, but here is a million expensive products that will "fix" you". "We would love to support you and your just pay us an arm and a leg!"
I have nothing against the foundation or the people who choose to go to the conference, in fact I'm so glad that they can go, but I just find it frustrating that not only do I have to pay by being 'abnormal', but now I have to pay money to feel 'normal' for a day or two.That's crazy! If this is the kind of support that we get, I don't want it! I will take the support of my wonderful family and friends who do it without fees, advertisements about shampoo, plane tickets, suggestions for wig makers, and an underlying tone that there is something wrong with me that should be fixed.
Why is that, because I was born with something that makes me different, I'm either made to feel like I need to hide it, or I need to shell out tons of money to find others like me? Why doesn't the average person need to change to accept me? I'm the one who has had to learn to adapt, I think it's someone else's turn! Oh yes, and please do it for free.

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