Comment by keith on March 12, 2010 at 1:30am

you could come to my place of employment and explain to everyone, what we have, and that we are normal people just like "them", that way, it would be easier on me, when i decide to go without my hat! LOL!

Comment by JeffreySF on March 12, 2010 at 4:14pm

Try calling NAAF and ask them for some pointers on how to help.
Have you joined the Alopecia Areata Registry? NIH funding is ending soon. So if you havent joined please do ASAP!

Good luck and thanks for wanting to help.

Jeffrey

Comment by BaldGirlsDoLunch.org on March 12, 2010 at 11:52pm

Hi Tori,

Please join us and be a part of the first annual International Women with Alopecia Month, every year July 1-31. Our Bald Girls Do Lunch organization for women has designated this month with 2010 being our first full July of events in many cities.

Join in and volunteer for the New York City bagel brunch event on July 17th in Manhattan or any of the others were setting up in other cities in the US, Canada and beyond.

We're an award-winning and highly progressive organization for women.....and the only one created specifically for women with alopecias Here's what women are saying in their own words about what we're doing.

Feel free to drop me a line directly to thea@baldgirlsdolunch.org or 800.578.5332

And before that, I hope you'll come to our Celebrate night on April 14th, also in Manhattan. Bring friends for a really nice night networking with people with alopecia,supporters, luxury wig makers, Bobbi Brown artists, and more.

Thanks for wanting to help!

Alopecians are only 0.1% to 0.2 % of the current population (though the risk over a lifetime is 1.7% of the population)....so that's not a whole lot of us in any one spot. Bald Girls Do Lunch is on the front lines of creating positive awareness so more can be known about our condition and the issues that affect us all. I hope you'll be a new member of our growing and exciting network of women.

Thea, founder
www.BaldGirlsDoLunch.org
Visit our real time research updates in the blog.

Comment by margaret staib on March 13, 2010 at 12:13pm

Tori, go to the support group in NYC through NAAF. You will find the contact information for it on the website. It meets once a month. The leader is a wonderful person. She will have ideas how to get more involved as well. You will meet great people. There was not one here on Long Island so I started one with a friend and it's been great. We have future fund raisers in the works and continue to remain hopeful for the cure one day as well as being positive and living life the fullest with support. It is not a pity party, it's positive energy from great people. I feel you can have both. Good luck! Margaret Staib

Comment by Mary on March 14, 2010 at 2:51pm

It's been 2 years for me, Tori. I feel the same way you do, frustrated by the lack of public awareness and by the assumption that every bald woman has cancer. Last year, I came up with a simple idea I called the "National Bald Out" - here's my April 11, 2009 AW post:

"You've heard of the "Great American Smoke Out" - the day when everyone is encouraged to stop smoking for just one day?

What if, for ONE day, all the bald women in this country (or whatever country you live in) came out in public with nothing on their heads? Imagine the effect! People wouldn't be able to assume that every bald woman they see has cancer. Bald women would become non-remarkable very quickly, just as bald men have. Women like me and other members of AW, who already go out in public bald, would instantly stop feeling so alone."

Here's what happened on July 19, all around the U.S., and also in Canada and the UK:
http://www.alopeciaworld.net/video/national-bald-out-day-2009

Please join the National Bald Out™ Group here on AW. Saturday, July 17, 2010 is the Second Annual National Bald Out ™ Day. More info is coming soon.

Comment by Suzanne Kennedy on March 17, 2010 at 8:25pm

I just joined the Alopecia Areata Registry as well. Got my paperwork in the mail the other today and spent today filling out the forms. I'm excited that they might be able to learn something about it!

Comment by JeffreySF on March 18, 2010 at 2:58am

Thanks for joining the Registry Suzanne. it's our best hope for a cure at the moment.

Jeffrey

Comment by Suzanne Kennedy on March 18, 2010 at 10:58am

I figured if nothing else, maybe something good can come out of having this, right?

Comment by Mary on March 18, 2010 at 11:09am

My feeling exactly, Suzanne. There are lots of ways good things can come of having to deal with this disease. A big one for me has been meeting the people on AW and sharing the journey. Here's another I blogged about last year:

http://www.alopeciaworld.net/profiles/blogs/because-i-have-alopecia

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