So Helen's Mom mentioned to me about the registry. I was contacted today after filling out the short survey. We have been invited to the 2nd Tier. Well, as I was giving her information about Angel, my twin without alopecia, the lady was telling me about the project. She mentioned that they are really needing children in the research. For some reason it helps them out a bunch. If you get accepted to the second tier, you get a free consultation with a pediatric dermatologist that specializes specifically in alopecia. The Registry does not pay for travel. I would love to go, but it doesn't look like we'll be able to travel as we are going to be going to Phoenix multiple times for treatment. So far in the study they have found that in most cases it has been genetically linked, so in our case my identical twins will help out a bunch. So, for us not being able to travel, they are going to send us a package to get each of the twins' blood drawn, then histories and physicals and consult notes, and then photographs of Della's scalp. I guess a major factor is that the child needs to have been diagnosed by a dermatologist. She asked me this over and over again. Kerri said that already the research has let them learn so much since 2001 (I believe). Imagine what they could learn if many people pitched in. So, I was hesitant about it, but after talking I realized that this could be a great thing! I urge you guys to try and fill out the "short survey".

Take Care!
Miranda

http://www.mdanderson.org/departments/alopecia/