It's been a while since I've posted here.

The google doc Chart was down for a few weeks for anyone who was interested in adding their stats to the Chart. I just got it back up.  It's protected now so you need to contact me to access it. I will provide a window for you to add your info and then I will remove access since someone with the google name Chupacabra went in and deleted the whole thing. Fortunately, I'm computer savvy enough to know how to remedy impish play of such kind.

Someone asked me to add sunscreen use so I updated the Sunbathing query.  If anyone wants to look at it or edit their entry, feel free to let me know.  I honestly welcome input on questions, additions, questions about, and requests to alter current questions. 

I wish I could leave it open the way it was, but I don't trust that scoundrel won't come in and try to delete our stuff again.

Anywho....

I wanted to share with you guys that I've been provided with some VERY interesting information about Research this past week.

After I called all the possibilities I could find on Research studies, I have FINALLY gotten to the bottom of the FFA research study supposedly being conducted per the Citrical Alopecia Website.

OK so here's the deal.....

this guy:

University of Pennsylvania
Philadelphia, Pennsylvania
Investigator: George Cotsarelis, MD
Contact: 215-662-2737

is a Hair research Dr. That's all he does is research hair problems.  UPenn has a research study center and they have a coordinator named Justin who has informed me of what's happening!

This Dr (and perhaps her husband who's a Derm too)

Duke University (central site)
Durham, North Carolina
Investigator: Elise A. Olsen, MD
Contact: joan.wilson@dm.duke.edu

Is the KEY person, at least on the East Coast who is spearheading a Research Project on Frontal Fibrosing Alopecia.

UPenn is a participating satellite research center but Dr Olsen is the go to Dr for all the other Sites.  It is NOT FUNDED, so Dr's and/or their associated Universities/Hospitals have to agree to participate on their own time.

Justin (UPenn research coordinator) scheduled a bunch of patients to start the study for this week but had to call and cancel everyone because he told me last week there was a Medical hair Conference in Florida and the Dr.'s all came back and decided to put a hold on the study for a bit while they regroup and ......  do something, Justin could not say what BUT he was hired to coordinate research specifically for FFA and he told me he'd get back to me as soon as he had word about what was going on.

I'll try to keep you all posted.

If I were you I'd have my doctor contact Dr Olsen to get into her study for YOU and any other patients they have with this disease.