Comment by Norm on June 28, 2011 at 12:23pm

Oh no... you mean you get it from parrots now?? :)

Comment by Bald and Fabulous AKA Terri on June 28, 2011 at 1:20pm

"polly wanna cracker" Norm I do so enjoy your sense of humour

Comment by Petra on June 28, 2011 at 2:43pm

That might explain why I'm a Pirate, aargh!

Comment by Tallgirl on June 28, 2011 at 4:18pm

Hey...seriously, folks...anything NEW at NAAF??? Or was it only party time there?

Norm, meet me behind the wood shed. I'm bringing Polly.

Comment by Norm on June 28, 2011 at 5:24pm

Aces of Pete, etc. (of all the parrots in all the world, TG brings a dyslexic one... hey ho)

Comment by elsa on July 3, 2011 at 8:29am

could not open the link http://www.medworm.com/rss/search.php?qu=Alopecia+"hair+loss"+baldness&kid=33708&t=Alopecia&f=c&r=Any&journals=1
is there smth wrong?

Comment by Tallgirl on July 3, 2011 at 9:05am

I was able to open it, so maybe it is your computer having issues.

Comment by Diana Carter on July 5, 2011 at 12:09am

Wow! I am certainly not qualified to give a report, however I did take notes. This was my first conference, and some of the 'medical stuff' just went way over my head. I will give you what I can..hoping that we can go to the NAAF website ( www.naaf.org ) for a recap of the info shared at the conference. Certainly would be more than what I am able to share with you.
Dr. Strick talked about new advances in diverting the immune systems attention. He said one of my favorite things from the conference...that is, "how you're doing is not measured by the amount of hair on your head"...it is about the 'emotional' cure. I find this to be very true. My non-alopecian friends often ask me, "how's your hair?" Well, I have almost all of it right now, but that is by no means how I am doing with the emotional aspects of my Alopecia.
Angela Christiano said that AA is the most prevalent auto-immune disease in the US, carries of of the highest burdens, and yet most dont know about it. In other auto-immune diseases ( such as Rhumatoid Arthritis, type 1 diabetes, Celiac Disease), CTLA 4 is the gene most shared.
Vicki Kalabokes, CEO and President of NAAF shared about NAAF's accomplishments in the past year. Though my notes fail me, she did speak of a Treatment Development Program and $6 million dollar budget on top of the normal funds.
Allison Waggoner said, "Our lives are marked by moments of when we found out we had AA" & said, "Just be yourself- because everyone else is already taken."
Common to see in patients with AA: Atopic exema, allergies, dermatitis. Something about checking your anti-bodies on your Thyroid levels.
Zach Smith talked about, "When was your breakthrough moment when your perspective changed?" and don't hide behind your AA.
And my #1 question was answered, in which I have blogged about...whether to boost or suppress our immune systems? The answer is, "NO!" to both. If we boost our immune systems, we are strengthening what is causing our hairloss. If we suppress it, we may gain hair, while compromising our health otherwise!
I apologize for (much) shortcomings in my note taking, as they were taken for my own benefit... anything over my head, I simply didn't take notes on. lol
Anyone not registered in NAAF's registry is encouraged to do so soon. Registry funds end September 30, 2011. I was able to donate blood for research, have a skin analysis, and filled out the long and short forms for the registry. See more info on their website on this.
http://www.naaf.org/site/PageServer?pagename=research_registry

Also at the conference, there was a Q&A time made up of a panel of physicians and researchers, to answer our questions, an orientation session to met people from your own region, lots of support sessions to choose from, A Welcome Session, The Tortoise & Hair 1 Mile Fundraiser Walk (top fundraiser was a child with AA, raising $4,000..sorry, I didnt get the name though), a dessert, dance party..for mere enjoyment..and it definitely was enjoyed, movie night outdoors with the families and friends, let's see...more, more, more!
Hope this helps. Maybe some others can add more imput than me...I wasn't really taking notes on treatment options, as I have opted not to have treatments that cannot offer a cure. Just my own personal choice, but I know, not for everyone. Hugs.

Comment by Tallgirl on July 5, 2011 at 12:16am

Thanks Dom, Robb and Diana. I am hoping Kasta will add the info she gave me privately on this blog as well, for the sake of those who also missed the conference.

Comment by Renee on July 26, 2011 at 2:46pm

What is Allison Waggoner's story? Did her hair grow back? Does she just have spots? Is she wearing a wig?

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