Scleroderma Information » Scleroderma » SF Bash Update
Question:
This was the first conference I attended and I was amazed at all the wonderful information there. Information from Doctors and patients. You can get alot from other people with the same thing you have. It was a fun time. I hope to do it again next year. We even got in on a dognapping and got to eat part of the ransom. LOL Syl Shelley Ensz: Scleroderma from A to Z <webmas…@sclero.org> wrote in message news:3mWH3.34$hs.3125@monger.newsread.com… – Hide quoted text — Show quoted text -> Conference photos and slide shows of the fabulous time had by hundreds of > folks (over 500, as a matter of fact) at the national SF conference in San > Diego last month are posted online at: > http://www.sclero.org/support/photos/a-to-z.html > This includes slide shows of Jason Alexander, plus Jason Alexander and SF > board members hanging spoons from their noses! No kidding! You’ll see > hundreds of onliners here. Browse the photos, meet the people and BE THERE > next year for the grandest time you can imagine plus oodles of super medical > information, too, by the very top docs in the world. > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages
Response:
Thank you Jaimes. I agree that if you are not an organization I don’t feel you should use that domain registration except as a last resort. I think I would just keep thinking of one till I found one that was available as a .com if it was my own personal site. I didn’t post my question because I thought they were being misleading. I assumed they were an organization and that I just couldn’t find how to join on their sites. I agree with your HO. I was honestly confused. Smiles 
Apple Annie ***To reply remove "nospam" from my address***
Response:
Shelley, It is so good to see you post here!!!! Please keep doing so as the information and support you offer is priceless. Colleen Shelley Ensz: Scleroderma from A to Z wrote: – Hide quoted text — Show quoted text -> Conference photos and slide shows of the fabulous time had by hundreds of > folks (over 500, as a matter of fact) at the national SF conference in San > Diego last month are posted online at: > http://www.sclero.org/support/photos/a-to-z.html > This includes slide shows of Jason Alexander, plus Jason Alexander and SF > board members hanging spoons from their noses! No kidding! You’ll see > hundreds of onliners here. Browse the photos, meet the people and BE THERE > next year for the grandest time you can imagine plus oodles of super medical > information, too, by the very top docs in the world. > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages
Response:
Shelley: You’ve got some great pictures! But…we do too! Check out the SD World 1999 SF Conference Picture Page at: http://www.sdworld.org/Conference/conf99.htm We had SO much fun! What was fascinating was all the seminars and informational groups. I went to a great number and discovered what a difference it makes to know that there are really such caring doctors out there doing research. It was standing room only at these talks even though they were repeated to allow more folks to attend. The pictures are amazing, too. It has sure helped me put faces to the names I’ve seen here and there on the net. Oh, and don’t forget the other pictures you have of the Conference. The SWA web site at: http://www.sclero.org/support/swa/a-to-z.html has a picture from the very first SWA meeting. All those Webmasters in one room! I found it quite amazing that no one…not one….talked in HTML the whole night! <VVVBG> If any of you out there get a chance to go next year to the SF Conference, do go. I heartily recommend it! 
Judy — SD World Scleroderma and Other Autoimmune Diseases Email Support List, Message Board , ICQ Chats http://www.sdworld.org Shelley Ensz: Scleroderma from A to Z <webmas…@sclero.org> wrote in message news:3mWH3.34$hs.3125@monger.newsread.com… – Hide quoted text — Show quoted text -> Conference photos and slide shows of the fabulous time had by hundreds of > folks (over 500, as a matter of fact) at the national SF conference in San > Diego last month are posted online at: > http://www.sclero.org/support/photos/a-to-z.html > This includes slide shows of Jason Alexander, plus Jason Alexander and SF > board members hanging spoons from their noses! No kidding! You’ll see > hundreds of onliners here. Browse the photos, meet the people and BE THERE > next year for the grandest time you can imagine plus oodles of super medical > information, too, by the very top docs in the world. > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages
Response:
Conference photos and slide shows of the fabulous time had by hundreds of folks (over 500, as a matter of fact) at the national SF conference in San Diego last month are posted online at: http://www.sclero.org/support/photos/a-to-z.html This includes slide shows of Jason Alexander, plus Jason Alexander and SF board members hanging spoons from their noses! No kidding! You’ll see hundreds of onliners here. Browse the photos, meet the people and BE THERE next year for the grandest time you can imagine plus oodles of super medical information, too, by the very top docs in the world. Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages
Response:
Annie, Now there’s a bonafied question indeed! I remember that Sherry had gotten SclerodermaSupport.org but because she was not an organisation or foundation, she thought better of it and uses .com so as not to misrepresent the web site. InterNIC documentation states that .org is ‘typically’ used by non-profits so there is no regulation against personal use. If it were me starting up a web site and the .com were not available, I might shoot for a .net, or .cc or .us. At last resort, because there is no regulation, I would go for .org. However, I would be sure to make it known that there is no association or organisation to join, no dues, no membership requirements, etc., so that people wouldn’t be confused. I saw your guestbook entry regarding joining and I am sorry you received no responses. I am very glad you posted it here! All that said, IMHO, just because it’s a .org and it may not be an organisation or foundation does not discount potentially valuable that may be found there! Find support wherever you can because there are as many wonderful as well as diverse resources on the web! Take care and be well! –Jaimes – Hide quoted text — Show quoted text -Apple Annie wrote: > Shelley and SDWorld. I am glad to see you posting here. I am curious about > something. I noticed you both use the .org in your domain name. Does your > websites represent an organization or did you just choose those domains? I have > been trying to join all the scleroderma organizations out there because I > figure they are all working for the common good related to our disease. I > couldn’t find membership information on either of your sites. I asked in both > of your guestbooks and emailed you but didn’t get a response. I wasn’t sure if > it was your personal website and you just chose to represent it as a .org > domain or if you are actually a site representing an organization. If you are > an organization let me know how I can join. I am not rich but I feel even my > yearly membership dues in all the organizations for scleroderma help at least a > little. I joined the scleroderma foundation already and my local chapter. > Smiles > Apple Annie > ***To reply remove "nospam" from my address***
Response:
Yes great photos Shelley. I assume you are refering to the SF Conference not the DC Bash in your subject heading. The conference is great. I really find that we have a lot of comadarie there. It is so nice to meet others. Especially those we have met online. It is like a massive hug fest. I always enjoyed the looks on peoples face when they would glance down at a name tag and realize it was an email buddy or a chat pal. BTW Welcome to the newsgroup. We have a lot of fun here. Sherry Messick Visit Surviving Scleroderma http://SclerodermaSupport.com The Scleroderma & Autoimmune Digest Email Support List http://SclerodermaSupport.com/digest "We are all Beacons of Light for each other" Oprah Winfrey
Response:
Shelley and SDWorld. I am glad to see you posting here. I am curious about something. I noticed you both use the .org in your domain name. Does your websites represent an organization or did you just choose those domains? I have been trying to join all the scleroderma organizations out there because I figure they are all working for the common good related to our disease. I couldn’t find membership information on either of your sites. I asked in both of your guestbooks and emailed you but didn’t get a response. I wasn’t sure if it was your personal website and you just chose to represent it as a .org domain or if you are actually a site representing an organization. If you are an organization let me know how I can join. I am not rich but I feel even my yearly membership dues in all the organizations for scleroderma help at least a little. I joined the scleroderma foundation already and my local chapter. Smiles Apple Annie ***To reply remove "nospam" from my address***
no comment untill now