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We'd like to know what you think about our web site. Please leave your comments in this public guest book so we can share your thoughts with other visitors. Click here to add your commentsSunday, November 24, 2002 Hi my name is Stephi. I'm from Germany and I have to present a report about XP. There for I was at the internet for searching. But as you know, you can hardly find something about it. So I would like to ask somebody of, if he or she would like to write me an e-mail. It would be so cool. At the moment I'm working with a doctor here in Germany. I send him a mail with questions to the children and their adults. And I hope they will answer it. Maybe you are also interested in this what I make so you could send me a mail. I want to show all of my mates in school what XP is and the society has to been confronted with his topic. Thank you for attention and I hope I will see you next time. I think your web-site is great and gives lots of really good information. My name is Clare and i'm doing a research project on xeroderma pigmentosum for my grade 11 formal written essay. If there is anyone out there who would like to send some additional information i would be very grateful and interested. Thanks alot! Heard the Owl Patrol camp was a great success! Can't wait to see the pictures! Brad Goldhammer Guten Tag, zdf.reporter sendet heute, Mittwoch, 6.3.2002, 21 Uhr, eine Reportage �ber Mondscheinkind David. Nach der Sendung ist au�erdem ein xp-Betroffener zu Gast im Chat unter http://reporter.zdf.de. Die ganze Reportage von Anne Reidt ist ab Donnerstag unter der Adresse http://reporter.zdf.de/index_direkt.cfm?id=1713 im Netz zu finden. Mit freundlichen Gr��en, zdf.reporter Heard that the Owl Patrol Night time camp was a great success. From the photos everyone seems to be enjoying themselves. I just stumbled across your site from the Changing Faces website. I read the many stories of those with XP and was greatly moved. I have albinism so to a very slight degree I know what somee of you are going through. Good luck up and keep up the positive attitude so many of you seem to have. amy nadley i really enjoyed your website and learned from it as well. i am interested in learning about the UV rays emitted from different light sources such as flourescent, halogen, and regular light bulbs. any help in this area would be great - i have melasma and hyperpigment in my facial skin. i need to learn all UV sources. thanks. amy nadley I was at the Owl Patrol camp and it was brilliant! The work that is done by everyone involved really helps so many people! I really couldnt fault the camp in anyway it was amazing and i dont think anyone who was there will forget it in a hurry! I cant wait until next year hope everything is going ok with the other events that you hold throughout the year! Good Luck to you all. This is a GREAT website. I have just finished a book about a girl who had Xeroderma Pigmentosum. By the way if anyone is interested in reading it its called How Do I Love Thee By Lurlene McDaniel. I read that and i realized how hard it must be. I wanted to learn more about XP. Thanks for all this great information! Very interesting site and content. I just surfed in. Cheers
James jatt206 I think the website is good and interesting Kayla/ I am a 6th grade student researching XP for a school science project. This site has been a lot of help to me and my 2 science partners. We have gone to many sites about XP but they all pretty much talk about the same thing, but this one helped us out a lot. It has been a lot of fun researching this disease. It is very interesting to learn about.I cant wait to give our science Fair presentation. I think every one will like our project. Thanks for all your help.
Great sfuff !! Nice website keep up your good work!! I will be back... annie i have a barbie that has xp. Alissa Hi I am a student from Maine, USA and I was wondering if I could contact someone by e-mail or instant messager. To ask questions about xp beacuse I need some help with information. Please contact me. Thanks. Laura and Alissa Hi. We are Laura and Alissa and we're from Maine. We were wondering if you could contact us because we need to interview someone who knows about xp or has the disease. We are students and are doing a research project on this and we need help badly. So if you have anhy time, please email us back. Thanks. Jeremy Very creative design, I liked the colors. asdas I Love this site
Tuesday, April 15, 2003 Hi, I'm not an x-p patient but I do have many, Many skin cancers basil cell and squamous cell skin. I am a female 62 years old and many years of sun bathing. I have probably had 50 removed over the years and they tell nothing I can do to help at this point. I would very much like to try the new product dimericine. Please advise me of a clinical trial or anything else I might be able to take part in. thanks, Nancy Markley
Monday, April 28, 2003 Hi! Your website is really informative! My daughter and I probably have a form of xp and didn't know it. I wanted to order the dimericine from your website but I couldn't find it. Please let me know where it is in there. Thank you! Nancy C. Smith I am a freshman in high school and I am doing a report on XP. I am very interested in this disorder, and I would like to learn more about it. Danieal VonLangen My heart goes out to all those who suffer, and to the families who have to just stand by and watch. This started out as a school report, and has ended up touching my heart for ever. As I graduate from nursing school this January, I will make it a mission to pass all info on and to educate all those inn our field. I will also try and do all I can for the cause. God bless!!! Danieal VonLangen (New York)
I think it is poitivly amazing what you do for these children that are cursed with this horrible disease. I want to congratulate you for oing this. I also want to say that the idea of the night camp for these children is also amazing. Thank-you for taking it upon yourselves to do such a wonderful thing for them. Eviana Parra? I am 13 years old in the eight grade. You helped me with research for a school report of our choice. I think that keeping more website under different names that are easier to spell would be good. Also your website is great and very informative. Maybe www.no-light.com would be good. Sunday, October 12, 2003 I think this is a cool thing to do for kids that cant go out side in the day light. I love to meet a with XP. They see everything diff. then me. Wednesday, September 24, 2003 i think the site is really good very good when it comes to infomation Thursday, August 28, 2003 This site is interesting as well as informative. Enjoyed browsing through the site. Keep up the good work. Greetings.. Wednesday, August 27, 2003 It's realy good site! Best wishes, Eric, Monday, August 25, 2003 hi,your site is very good. I like it very much. Thursday, August 07, 2003 Anthelios XL SPF 60+ made by La Roche Posay - what let me live a normal life. The only sunblock that allows me to live normally, go out in the sun etc. When i don't use it, i takes about 15 minutes out in the sun to take me out for over a week. My face swells up, and a layer of my skin dries up and falls of. Hope it helps someone out there! Because it allowed me to live normally. Friday, January 02, 2004 Hello! My name isUte and come from Germany. I write for the moment a skilled work over XP and find it very interesting more over this illness to experience. Many greetings Ute Monday, January 05, 2004 hi! im Jill from the US, im working on a project on this topic and know little at all about it. If someone could email me some facts it would be awesome! Thanks Jill
Unfortunately the site that had been hosting our guest book has ceased operating and the lovely comments that they had stored have been lost. So we have created our own, basic guest book. Please do leave your comments and suggestions. They do help.
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