Scleroderma Information » Scleroderma » links
Question:
This is exactly what I meant when I said that each website has it’s own viewpoint and unique contribution. Here is a relatively new site, and you are praising it because you find it different and that it has information you are looking for…so, it hasn’t all been done, already, has it? :-) — Lynn ___________________________________________________ Apple Annie <applespi…@aol.comnospam> wrote in message news:19991023144934.06551.00000291@ng-ft1.aol.com…
I would also like to say that Doris Reichard and her daughter began an entirely new kind of scleroderma site when they put theirs up. They didn’t rehash all the information already on other sites they chose a new route and I absolutely adore their site. I find it relaxing and it gives me so much information to help me cope with diet and other things. I think you will enjoy visiting it to. http://www.toad.net/~dreichard/ Smiles 
Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
I forgot to add Sherry’s scleroderma overview. I printed this and shared copies with my family and friends and they better understand my disease now. Thanks Sherry for putting that together for us. http://www.sclerodermasupport.com/sdoverview/index.htm Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
Lets not forget Doris, Ed and a few others who have contributed to our common cause for being together…..sd and other chronic illnesses. – Hide quoted text — Show quoted text -Apple Annie wrote: > I have learned a lot from Sherry’s medical pages and Amie’s medical briefs. I > noticed on Sherry’s main page that she launched her site in 1996 inspired by > her friend Kate Nance who already had a fantastic site online. These two > original sites have been here long enough for us to know that they will be > providing support for the duration and that they will never cease to amaze us. > The obvious growth of these sites are a credit to their creator. They created a > winner and it shows. > I rely on these two sites because they have been doing it long enough for us to > know we are reading original material which they worked hard to put together > for us from scratch. I thought about doing a website for scleroderma but it > occured to me that Sherry, Kate and Amie have already done all the work for us > and found all the great stuff and I’d just be putting up my version of the > information they already have so I’ll just leave it to the pros alright Sherry > and Amie? Sherry, Kate and Amie are a hard act to follow without just > repeating their work and putting our own flare on the end. > Since so many people are discussing links I will share some of my favorites > from Sherry’s and Kate/Amie’s site. New sites have came along but we dont’ want > to forget the pioneers who created the original sites for scleroderma and > brought all the information to a forefront for others to utilize. I think I’ll > do a different list every day until I share all the great places they have on > their sites. > A taste of Sherry’s devotion since 1996 > Dental Involvement http://www.sclerodermasupport.com/medical/dental/index.htm > Skin Involvement http://www.sclerodermasupport.com/medical/skin/index.htm > Gastrointestinal http://www.sclerodermasupport.com/medical/gastro/index.htm > Raynauds http://www.sclerodermasupport.com/medical/raynauds/index.htm > My husbands favorite one is sexual difficulities > http://www.sclerodermasupport.com/medical/sexual/index.htm > Adaptation hints and tips galore > http://www.sclerodermasupport.com/adaptation/index.htm > A thorough list of support group contact information > http://www.sclerodermasupport.com/supportl/index.htm > The Digest email list is more than a website but it is my all time favorite > place in the world thanks to Sherry’s hard work and the compassion of all of > the members. > http://www.sclerodermasupport.com/digest/index.htm > Personal Story pages http://www.sclerodermasupport.com/stories/index.htm > Genetics of scleroderma http://www.sclerodermasupport.com/genetics/index.htm > An example of Kates work and Amie’s management for years before. Sorry Amie I > am not sure when Kate began her site. I know it is before Sherry’s but not sure > of the year. > Diffuse personal stories http://ihavescleroderma.com/diffuse.html > Crest personal stories http://ihavescleroderma.com/crestlim.html > Morphea/Linear stories http://ihavescleroderma.com/morlin.html > Tribute stories http://ihavescleroderma.com/tributes.html > I laughed so hard at this page called "Excuse Me" > http://ihavescleroderma.com/pages/excuse.htm > Is Scleroderma Hereditary by Kate Nance and Dr. Dolores Vazquez-Abad M.D. > http://ihavescleroderma.com/pages/heredity.htm > Intimacy and scleroderma http://ihavescleroderma.com/pages/saad.htm > Advances in hand surgery http://ihavescleroderma.com/pages/hand.htm > My sister who is a fanatic about art info loved Amie’s art section > http://ihavescleroderma.com/art.htm > Thank you Kate where ever you are for your dedication to people with > scleroderma. Thank you Amie for keeping Kates page alive and adding your > special touch. Sherry thank you for all you do for other people. Your site is > magnificient and your integrity and love for all of us "shines like a beacon". > Sherry I know you got that quote on your page from Oprah Winfrey but it fits > the projection of your soul to a tee. > Oh one other site I have learned a lot from is Donna Armers site on Crest. I > understand from her site that she has been around for a long time. I apologize > for not knowing when her page was launched. > http://hometown.aol.com/REDAPRIL4/index.html > Smiles > Apple Annie > ***To reply remove "nospam" from my address*** > My favorite scleroderma and arthritis sites are…. > http://sclerodermasupport.com > http://ihavescleroderma.com > http://www.toad.net/~dreichard/ > http://arthritisnet.com
Response:
Annie, thank you for your kind words to myself, Kate and Amie. Let me first say that Kate was and would be the first person to urge others to join the online community and create a website. She instilled in me her dream to one day have loads of scleroderma related sites networked together. I have done all i can to work towards making her dream a reality. Yes many of the sites have their own flare on the information but they also have their own great brand of support. Each site is unique in some way and provides a great resource. What may not seem pertinent to me may be just what the next person may need to read. This is why I try to share anything and everything I can find. >I rely on these two sites because they have been doing it long enough for us >to >know we are reading original material which they worked hard to put together >for us from scratch. I thought about doing a website for scleroderma but it >occured to me that Sherry, Kate and Amie have already done all the work for >us >and found all the great stuff and I’d just be putting up my version of the >information they already have so I’ll just leave it to the pros alright >Sherry >and Amie? Sherry, Kate and Amie are a hard act to follow without just >repeating their work and putting our own flare on the end
Well Annie first let me say that there is in my eyes no competition between our sites. I create my website because I love to do it and because I want to help others find the information. I love to surf and would do it anyway so I might as well share it with others. I personally have gained a lot of support and information from other sites so I am thankful there are so many cropping up. Now about creating websites that may have a lot of the same information. There is not a lot out here online about scleroderma to choose from so yes it is inevidable that sites will have much of the same information. There is only so many ways to tell how SD involves something. I do feel having several sites sharing the same information is a good thing. That way if people surfing for SD information don’t find my site or Amie’s site they will find yours, theirs or someones. The more info available the more the people will benefit. I do think there should be no competition between the sites. They are all fantastic in their own way. They all offer something great to the online community. >I think I’ll >do a different list every day until I share all the great places they have on >their sites.
Honey, you better put your surfin shoes on then because there are thousands and thousands of links online related to scleroderma. On my site alone I have over 1000 pages and god only knows how many external links so if you share all those pages here people will be accusing you of spamming before long, haha. I honestly can’t remember how many actual pages are within my website. OHHHHH Jaimes, I know you know. >Thank you Kate where ever you are for your dedication to people with >scleroderma.
I second this thank you to my dear friend. This lady took great care in offering support. She cared with great passion and that is rare in todays world. She was a perfectionist and put great effort in researching and responding to those that contacted her. >Thank you Amie for keeping Kates page alive and adding your >special touch.
Amie has done a lot in her own right for us online to. Amie did the leg work to get this newsgroup created in the first place. Without her we wouldn’t have this wonderful place to chat with each other and share information. >Sherry thank you for all you do for other people. Your site is >magnificient and your integrity and love for all of us "shines like a >beacon". >Sherry I know you got that quote on your page from Oprah Winfrey but it fits >the projection of your soul to a tee.
Thank you again, Gwaaa shucks you are making me blush! About the beacon quote I was watching Oprah one day and she said that and I instantly felt it applied to the people online who are always willing to support people. I got on that day and added it to my website and my email signature. It wasn’t too long after I started my site. The people online really do shine like beacons of support to each other. That is no thanks to me, Kate or Amie. That is thanks to all the warm hearted people online that participate. People thank me for the digest being such a great source of support but honestly I do very little to make it that way. I just send the posts out. It is all of those people that respond daily to others that makes the digest what it is. The same applies to this newsgroup, the chats, the message boards and the websites. We supply the pages on the sites but it is all of you that make them what they are by your participation. What would Kate’s excuse me page be without people sharing? What would the Coffeehouse on my page be without everyone that posted? What would the digest be if no one supported one another? How could there be an adaptation page on my site without others sharing their tips? I also must say that it is the inspiration and suggestions of so many online that has given me ideas for much of the pages I have created. I believe other people with sites, chats, message boards and mailing list that have cropped up over the years would agree that they have very little to do with making it a great place. The people that use these places do. Since Kate, Donna and I began our sites we have seen an explosion of internet activity and thankfully we are seeing a lot of people with scleroderma finding support online. More people, more sites, more resources. This is another reason why it is so important that we join hands and work together online if for no other reason then to help all these people that are finding us online. The bottom line is that I truly wish all of us that have sites could work together to share information, build a network and bring Kate’s dream to reality. We are close but there is more work that could be done. We don’t all have to be best friends like Kate and I was early on. Kate and I picked each others brains to death when I began a website. Let me say to that I didn’t come up with the idea to begin a site. Kate did. She is the one that pushed me and took me under her wing and taught me all she knew. I didn’t even know what html coding was until she taught me. All it takes to have a network between us is to put any personal feelings aside and just share the information and link to each other to benefit the people out here surfing. They are mostly sick and many are not computer literate and by us making that extra effort to share what others have online we are then helping to make their life a little easier. Just my 2 cents. Sherry Messick Visit Surviving Scleroderma http://SclerodermaSupport.com The Scleroderma & Autoimmune Digest Email Support List (Subscribe Today) http://SclerodermaSupport.com/digest "We are all Beacons of Light for each other" Oprah Winfrey
Response:
Sherry in your note which I noticed Shelley, Lynn W or Judy didn’t have the guts to respond to shows us that you are doing your site for the right reasons. You don’t work to get attention. You don’t work to be on a pedastool. You don’t expect gratitude. This shows in the public. But you sure do deserve some gratitude. Respect must be earned and I feel you have earned it ten times over. >Yes many of the sites have their own flare on the information but they also >have their own great brand of support. Each site is unique in some way and >provides a great resource.
I respect what you are saying here but Sherry a person who has a big ego and wants to be perceived as important might take the work you have done and just duplicate it and then work every day to belittle those who helped them get to where they are. I have seen and still do see SOMEONE doing that here. For example. You credit much of your success to the late great Kate Nance. I bet you a dollar that when Shelley first got online that she got involved in the digest and other areas. I also bet you that when she began her website you, Kate and Amie rooted her on and pushed her website in the digest and on your webpages and had a real hand in letting others know about her site. But who does she credit for her work? Herself. What does that tell you? You post and I read Others, You, They. She posts and I read me, me, me, me. > What may not seem pertinent to me may be just what >the next person may need to read. This is why I try to share anything and >everything I can find.
You have that humble personality because you are doing your site for us not for yourself. You care. >Well Annie first let me say that there is in my eyes no competition between >our >sites. I create my website because I love to do it and because I want to help >others find the information. I love to surf and would do it anyway so I might >as well share it with others. I personally have gained a lot of support and >information from other sites so I am thankful there are so many cropping up.
Sherry, I wish this was a perfect community. I know that you never think of your site as being in competition with others. The recent posts here show that there is another site that does feel this is a competion. Sherry don’t you realize that when you speak in chat or share here that she always has to upstage you and try to out do you? Don’t you see that? Don’t others see that? >I do feel having several sites sharing the same information is a good thing. >That way if people surfing for SD information don’t find my site or Amie’s >site > they will find yours, theirs or someones. The more info available the more >the >people will benefit.
This theory only works if everyone links to one another. But when one site is biased as we know one of them is then this doesn’t work. Sherry you work hard to be impartial. >I do think there should be no competition between the sites. They are all >fantastic in their own way. They all offer something great to the online >community.
Big words and I agree. Too bad the few now vocal members didn’t offer a word of agreeance. Odd how they clam up when they are asked a question about something they did wrong but ready to type their little fingers off to try and upstage others here. >Honey, you better put your surfin shoes on then because there are thousands >and >thousands of links online related to scleroderma. On my site alone I have >over >1000 pages and god only knows how many external links so if you share all >those >pages here people will be accusing you of spamming before long, haha. I >honestly can’t remember how many actual pages are within my website. OHHHHH >Jaimes, I know you know.
Yes Miss Jaimes, we need you. Sherry I can surf with the best of them. Don’t worry. I love to indulge myself in the sites online. I’ll enjoy it. >I second this thank you to my dear friend. This lady took great care in >offering support. She cared with great passion and that is rare in todays >world. She was a perfectionist and put great effort in researching and >responding to those that contacted her.
Sherry you follow in her caring foot steps very well. Sherry I realize that the people who participate do make the interactive areas a success but without your soft hand to guide them and without Amie’s wisdom many of these sites and areas you have on your site would have failed. You can’t give all the credit to others. You have to accept a little for yourself. I bet the SWA can give you some hints on how to do that. >The bottom line is that I truly wish all of us that have sites could work >together to share information, build a network and bring Kate’s dream to >reality.
I couldn’t agree more. >All it takes to have a network between us is to put any personal feelings >aside >and just share the information and link to each other to benefit the people >out >here surfing. They are mostly sick and many are not computer literate and by >us >making that extra effort to share what others have online we are then helping >to make their life a little easier.
A wonderful theory. I know you work every day to achieve this. I believe that Amie, Doris, Ed, Donna and so many others do to. I just wish this was how others felt as well. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
>*Apple Annie* (and I use the term loosely, as it is not your real name)…
No Apple is not my first name you are correct. But my first name is Annie. >I founded it, and then asked Sherry if she would be my co-founder, as I was >pretty new to the internet. Although she agreed, and helped with some of >the initial thought on it, I did the entire web site myself, issued all the >invitations, and handled all of the correspondence for the SWA, from the >get-go. Sherry did lend her name and her support to the project, which >certainly did help this get off the ground.
Well of course I have no way of knowing the truth about this. >Originally, Sherry and I both listed our titles as co-founders. However, >after six months, we both deemed that the "co-founding" part of the SWA was >done with, and we both removed the "co-founders" logos from our web sites >and our titles. Sherry acknowledged that I was the one doing all the work >with the SWA from the beginning, and we agreed that I would remain in charge >of the SWA. Then I took upon myself the title of "Webmaster" since that >most closely matched the function I was performing.
Oh ok, I get it now. You made a mistake by calling yourself the founder and not the webmaster in the previous post? – Hide quoted text — Show quoted text ->>2. Is it an organization as you claim in another post you just sent >yesterday? >Organization, association, web ring, whatever you’d like to call it *Annie*. >It has no income whatsoever and all of the work is done by volunteers. But >it is definitely a lot of people working together for a common cause. >>3. Is it not just a page that you have placed links and you have asked or >>perhaps instructed those sites to include a logo to return to this page? >It is an association which has rules which members must follow in order to >get and keep their membership. Some of the rules regard web site content, >and another rule is to post the SWA logo on their site, which is linked back >to our master listing of members. >In return for this, the SWA offers a great many services. Although our >primary purpose is to make it as easy as possible for people to find >scleroderma information on the internet, we also provide many services to >webmasters, including a mentorship program, an annual meeting, active >promotion of the SWA and its members, and a private email list to provide >timely support and information for webmasters. >The full rules are posted for everyone to see at: >http://www.sclero.org/support/swa/members/invitation.html >>4. You stated earlier and never responded that you list "above board" >sites. >>Can you explain what are consider "above board sites" to you? >Yes, that would be sites which do not indulge in any immoral, illegal or >indecent web site content. That is one of the basic ground rules of the >SWA. >There has only been one site ever removed from the SWA for failure to follow >our rule regarding no "illegal" web site content. Copyright infringements >are illegal. There is a complete and well-documented file about this whole >situation which has been on file with the Scleroderma Foundation for the >past year. The copyright infringements in question were direct copies of >over a dozen pages of my Scleroderma from A to Z web site.
Why would the scleroderma foundation have any interest in your site or what you have on it? If they would get involved and take sides based on unproven accusations by you or anyone I feel they are not fit to run a non-profit. They have no place in such issues. Your site is a personal site as well as the majority of the major sites online. The scleroderma foundation is not the scleroderma net police you know. Sounds to me like you are trying to implicate someone. Shelley you are doing the same thing you did before. I asked you a simple question and instead of answering that you have to attack other people online. Obviously you have a personal problem you must address. >Do you have any more questions *Apple Annie*?
I’m sure I will. I am a very inquisitive person by nature ;0) Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
Apple Annie <applespi…@aol.comnospam> wrote in message news:19991023143909.08004.00000298@ng-ft1.aol.com…
<<<I thought about doing a website for scleroderma but it occured to me that Sherry, Kate and Amie have already done all the work for us and found all the great stuff and I’d just be putting up my version of the information they already have so I’ll just leave it to the pros alright Sherry and Amie?>>> ————————– The multitude of webmasters of other Scleroderma and autoimmune websites didn’t…and don’t…feel that way, or we wouldn’t have so many of the wonderful and diverse resources now available to us on the internet. Not to mention the ones that will be added, as time passes. Each of these sites has a unique viewpoint and makes its own contribution and should never be discouraged from making that contribution. And no one has already "found all the great stuff"! That’s defeatist. If it were true, we wouldn’t all still be surfing the web, looking for more information, and the members of this newsgroup wouldn’t be so appreciative of the links that Aunt Judy posts here. I sincerely hope that if you want to create your own website, you will. Rather than feeling intimidated by the accomplishments of others…take the chance! They had to start somewhere, too…. And before you ask the obvious question, nope, I have no desire to create a webpage; I haven’t an artistic bone in my body…LMAO!!! Lynn
Response:
>This is exactly what I meant when I said that each website has it’s own = >viewpoint and unique contribution. Here is a relatively new site, and = >you are praising it because you find it different and that it has = >information you are looking for…so, it hasn’t all been done, already, = >has it? :-) >– Lynn
Lynn exactly my point. Doris’s website is different than all the others. Some sites just are duplicates of others. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
Lynn, in your response to Annie, you hit the nail on the head. There’s nothing that any of us webmasters would love more than for there to be hundreds of more scleroderma sites on the Internet. That’s why we have organizations such as the SWA, which has a complete mentorship program to help anyone who wants to start a scleroderma website. There are many of us who feel that our job on the internet has only just begun, and who will not rest until there is support and information for every scleroderma patient and caregiver in the world. Therefore, we are working very hard with the international community and in making translated materials available. It is shocking how little scleroderma information and support is available in some countries. Right now, we are working with translators to establish support organizations in Romania and Malaysia. Every day, I get emails from every corner of the globe. There’s so much work to be done on the Internet…although we should cherish the work which everyone has done so far, we should never try to discourage the growth and expansion of scleroderma services on the Internet, or consider that all of our work is done, while there are still too many people in suffering in darkness and in pain, isolated from other patients and often even from society as a whole due to disfigurement or severe disability. Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages Visit "Scleroderma Sites to Surf!" at http://www.sclero.org/support/swa/a-to-z.html Email: s…@sclero.org
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I would also like to say that Doris Reichard and her daughter began an entirely new kind of scleroderma site when they put theirs up. They didn’t rehash all the information already on other sites they chose a new route and I absolutely adore their site. I find it relaxing and it gives me so much information to help me cope with diet and other things. I think you will enjoy visiting it to. http://www.toad.net/~dreichard/ Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
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>Subject: Re: links >Path: >lobby!newstf02.news.aol.com!portc03.blue.aol.com!news.compuserve.com!news
-master.compuserve.com!newsfeed.enteract.com!netnews.com!newspeer1.nac.net !yellow.newsread.com!netaxs.com!newsread.com!POSTED.monger.newsread.com!no t-for-mail – Hide quoted text — Show quoted text ->From: "Shelley Ensz" webmas…@sclero.org >Newsgroups: alt.support.scleroderma >References: <19991023143909.08004.00000…@ng-ft1.aol.com> >Lines: 40 >Organization: Scleroderma from A to Z >X-Newsreader: Microsoft Outlook Express 4.72.3110.1 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3 >Message-ID: <uLnQ3.3050$hK6.174…@monger.newsread.com> >Date: Sat, 23 Oct 1999 19:11:22 GMT >NNTP-Posting-Host: 208.200.182.201 >X-Complaints-To: Abuse Role <ab…@pro-ns.net>, We Care <ab…@newsread.com> >X-Trace: monger.newsread.com 940705882 208.200.182.201 (Sat, 23 Oct 1999 >15:11:22 EDT) >NNTP-Posting-Date: Sat, 23 Oct 1999 15:11:22 EDT >Annie, thank you for the history lesson, and for sharing with us so many >wonderful links. Your devotion to the few original scleroderma sites is most >commendable. >However, I’m sure those webmaster’s would be among the very first to jump in >and tell you that, thanks in large part to their inspiration, there are now >hundreds of scleroderma sites on the net, which they dearly love to link to >themselves, and for which they take great joy in having served to inspire. >So my "short list" of sites is actually a very, very long one, as I’ve found >every scleroderma site in the world to have something special and unique to >contribute. Many (but certainly not all of them) of those are listed in the >"Scleroderma Sites to Surf!" which is a free service of the Scleroderma >Webmaster’s Association, at: >http://www.sclero.org/support/swa/a-to-z.html >As far as longevity of the sites go, I cherish the brand new sites right >along with the oldies but goodies…the large ones along with the small >ones…the patient sites as well as the doctor’s sites…we are all so very >blessed with such an abundant and thriving online community. >I’m just as indebted to those who homesteaded scleroderma on the net, as I >am to those who are paving the way for the future. We haven’t even >scratched the scratch yet of what can be done for scleroderma patients and >caregivers throughout the world — as all of the scleroderma webmasters will >tell you, it is an enormous task, and not one which can be achieved with >just one site, or ten sites, or even a hundred sites. >Warm Hugs, >Shelley Ensz, Webmaster >Scleroderma from A to Z >http://www.sclero.org >Now available in 10 languages
Shelley, can you give us a brief history of the SWA? Jaimes corrected you once about who founded it when you failed to credit Sherry and listed yourself as the founder of it. Can you answer the following questions please? 1. Who founded, began, got it off the ground? 2. Is it an organization as you claim in another post you just sent yesterday? 3. Is it not just a page that you have placed links and you have asked or perhaps instructed those sites to include a logo to return to this page? 4. You stated earlier and never responded that you list "above board" sites. Can you explain what are consider "above board sites" to you? Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
I have learned a lot from Sherry’s medical pages and Amie’s medical briefs. I noticed on Sherry’s main page that she launched her site in 1996 inspired by her friend Kate Nance who already had a fantastic site online. These two original sites have been here long enough for us to know that they will be providing support for the duration and that they will never cease to amaze us. The obvious growth of these sites are a credit to their creator. They created a winner and it shows. I rely on these two sites because they have been doing it long enough for us to know we are reading original material which they worked hard to put together for us from scratch. I thought about doing a website for scleroderma but it occured to me that Sherry, Kate and Amie have already done all the work for us and found all the great stuff and I’d just be putting up my version of the information they already have so I’ll just leave it to the pros alright Sherry and Amie? Sherry, Kate and Amie are a hard act to follow without just repeating their work and putting our own flare on the end. Since so many people are discussing links I will share some of my favorites from Sherry’s and Kate/Amie’s site. New sites have came along but we dont’ want to forget the pioneers who created the original sites for scleroderma and brought all the information to a forefront for others to utilize. I think I’ll do a different list every day until I share all the great places they have on their sites. A taste of Sherry’s devotion since 1996 Dental Involvement http://www.sclerodermasupport.com/medical/dental/index.htm Skin Involvement http://www.sclerodermasupport.com/medical/skin/index.htm Gastrointestinal http://www.sclerodermasupport.com/medical/gastro/index.htm Raynauds http://www.sclerodermasupport.com/medical/raynauds/index.htm My husbands favorite one is sexual difficulities http://www.sclerodermasupport.com/medical/sexual/index.htm Adaptation hints and tips galore http://www.sclerodermasupport.com/adaptation/index.htm A thorough list of support group contact information http://www.sclerodermasupport.com/supportl/index.htm The Digest email list is more than a website but it is my all time favorite place in the world thanks to Sherry’s hard work and the compassion of all of the members. http://www.sclerodermasupport.com/digest/index.htm Personal Story pages http://www.sclerodermasupport.com/stories/index.htm Genetics of scleroderma http://www.sclerodermasupport.com/genetics/index.htm An example of Kates work and Amie’s management for years before. Sorry Amie I am not sure when Kate began her site. I know it is before Sherry’s but not sure of the year. Diffuse personal stories http://ihavescleroderma.com/diffuse.html Crest personal stories http://ihavescleroderma.com/crestlim.html Morphea/Linear stories http://ihavescleroderma.com/morlin.html Tribute stories http://ihavescleroderma.com/tributes.html I laughed so hard at this page called "Excuse Me" http://ihavescleroderma.com/pages/excuse.htm Is Scleroderma Hereditary by Kate Nance and Dr. Dolores Vazquez-Abad M.D. http://ihavescleroderma.com/pages/heredity.htm Intimacy and scleroderma http://ihavescleroderma.com/pages/saad.htm Advances in hand surgery http://ihavescleroderma.com/pages/hand.htm My sister who is a fanatic about art info loved Amie’s art section http://ihavescleroderma.com/art.htm Thank you Kate where ever you are for your dedication to people with scleroderma. Thank you Amie for keeping Kates page alive and adding your special touch. Sherry thank you for all you do for other people. Your site is magnificient and your integrity and love for all of us "shines like a beacon". Sherry I know you got that quote on your page from Oprah Winfrey but it fits the projection of your soul to a tee. Oh one other site I have learned a lot from is Donna Armers site on Crest. I understand from her site that she has been around for a long time. I apologize for not knowing when her page was launched. http://hometown.aol.com/REDAPRIL4/index.html Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
Response:
Apple Annie wrote in message
<19991024221259.14015.00000…@ng-xa1.aol.com>… >>I sincerely hope that if you want to create your own website, you will. = >>Rather than feeling intimidated by the accomplishments of others. >Shelley did you read this. There really is no need to feel intimidated by >accomplishments of others.
*Annie*, I have never, ever felt intimidated by the accomplishments of others. I rejoice in the achievements of everyone who accomplishes their ends by legal and ethical means. Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages
Response:
Stand by. – Hide quoted text — Show quoted text -Shelley Ensz wrote: > My deepest apologies to those of you who are rightfully seeking support, > information and comfort on the newsgroup. I’m very sorry that a few folks > are repeatedly insisting on covering these unsavory topics in a public > forum. > Since these topics are being raised both publicly and very unfairly, with > continual and undeserved assaults against my character, and have escalated > to include attacks on the SF’s integrity, along with references to the SF’s > legal counsel, Robert Riggs, the FBI, the SWA, and the SFM, ignoring all my > pleas to handle this privately and through proper channels….well, I think > it’s simply horrendous and I would urge you to spare your peace of mind, and > go on to other threads which are of a more uplifting character. But for > those who are gluttons for punishment and still following this thread > anyway: > Jaimes, could you please explain to me what on earth you mean by "why you > took it upon yourself to file a report with the Federal Bureau of > Investigation?" > I believe you may be suffering from a tremendous amount of misinformation. > Pray tell, who is telling you that I have done this? Why do they say I did > this? On what grounds, what charges did I purportedly make with the FBI? > And why on earth would you ever repeat such unsubstantiated lies in a > patient newsgroup, of all places? > Warm Hugs, > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages > Sir Lafsalot wrote in message <38149FC3.BD6B9…@home.com>… > >This is not about the SF; this is not about the Minnesota Chapter. This is > about > >you and how you have represented yourself online and the steps you have > taken > >toward maligning others to gain recognition and respect. > >Shelley Ensz wrote: > >> These are extremely serious allegations being made in a public forum, so > I > >> am forwarding this to the Scleroderma Foundation offices for their legal > >> counsel to review. > >> Shelley Ensz, Webmaster > >> Scleroderma from A to Z > >> http://www.sclero.org > >> Now available in 10 languages > >> Sir Lafsalot wrote in message <38146B83.D6BAE…@home.com>… > >> >Shelley Ensz wrote: > >> >> I founded it, and then asked Sherry if she would be my co-founder, as > I > >> was > >> >> pretty new to the internet. Although she agreed, and helped with some > of > >> >> the initial thought on it, I did the entire web site myself, issued > all > >> the > >> >> invitations, and handled all of the correspondence for the SWA, from > the > >> >> get-go. Sherry did lend her name and her support to the project, > which > >> >> certainly did help this get off the ground. > >> >> Originally, Sherry and I both listed our titles as co-founders. > However, > >> >> after six months, we both deemed that the "co-founding" part of the > SWA > >> was > >> >> done with, and we both removed the "co-founders" logos from our web > sites > >> >> and our titles. Sherry acknowledged that I was the one doing all the > >> work > >> >> with the SWA from the beginning, and we agreed that I would remain in > >> charge > >> >> of the SWA. Then I took upon myself the title of "Webmaster" since > that > >> >> most closely matched the function I was performing. > >> >You took more than the title of Webmaster. Sherry mentioned to you that > she > >> >wanted to do a web ring. She emailed you with a link to the webring > site. > >> >Neither of you could make sense of how to set it up. An > SDWebmaster@Yahoo > >> >account was set by both of you. You wanted Sherry involved because > people > >> didn’t > >> >know you. Sherry was so sick and couldn’t keep up with the volume of SWA > >> email, > >> >so you took this on under the guise of support. You used her reputation > to > >> >benefit yourself. What was originally a partnership became yours alone. > >> >As the months passed, you shut Sherrry out completely. You closed the > email > >> >account you both had opened for SWA email. You did this without her > >> knowledge > >> >while she was having open-heart surgery. In other words, you got her > help > >> for > >> >your benefit and then took the ball for your very own and ran with it, > >> >intentionally excluding her altogether. You wanted her to give up the > >> medical > >> >and chapter information on her site so you could could have it. Sherry > >> thanked > >> >you but said she wanted to keep these elements. In retaliation for > Sherry > >> not > >> >bending to your wishes, you closed the Yahoo account, purchased > sclero.org > >> and > >> >forged ahead with this "competition." > >> >Then you banned her from the SWA. Your words to a former webmaster: > >> >"I will create my own story pages, create my own digest, my own message > >> board > >> >and see who gives who a run for the money." > >> >Through all this, Sherry has been quiet. > >> >> Annie wrote: > >> >> >4. You stated earlier and never responded that you list "above board" > >> sites. > >> >> >Can you explain what are consider "above board sites" to you? > >> >> Yes, that would be sites which do not indulge in any immoral, illegal > or > >> >> indecent web site content. That is one of the basic ground rules of > the > >> SWA. > >> >> There has only been one site ever removed from the SWA for failure to > >> follow > >> >> our rule regarding no "illegal" web site content. Copyright > >> infringements > >> >> are illegal. There is a complete and well-documented file about this > >> whole > >> >> situation which has been on file with the Scleroderma Foundation for > the > >> >> past year. The copyright infringements in question were direct copies > of > >> >> over a dozen pages of my Scleroderma from A to Z web site. > >> >I believe we ought to hear from you directly why such a file even > exists. > >> >How can you claim copyright infringment when information presented is > not > >> yours > >> >to begin with? > >> >I would like to know: > >> >–why you took it upon yourself to initiate an investigation and why you > >> feel > >> >the SF should care what happens between two web sites for which they are > >> not > >> >responsible? > >> >–why you manipulated the SF to remove SclerodermaSupport.com from their > >> support > >> >page? > >> >–why, after Atty. Joe Pozen told you that he reviewed Sherry’s site and > >> found > >> >no such infringments, you did not retract your accusation? > >> >–why you took it upon yourself to file a report with the Federal Bureau > of > >> >Investigation? > >> >–why you feel Robert Riggs, who will not longer be with the SF as of > >> November > >> >1, 1999, is interested in your personal battles? > >> >–why, after Kate (may she rest in Peace…) and Sherry willingly gave > you > >> all > >> >this help at your request, this is your sick version of payment in kind. > >> >My heart is so heavy with grief right now, none of you can imagine… > >> >–Jaimes
– "Barefootin’, rootin’ tootin’ Jessie Jaimes: Soodoh-intelekchule Queen of d’Nile…" —
Response:
If they would get involved and take sides based on unproven >accusations by you or anyone I feel they are not fit to run a non-profit
*Annie* I am forwarding a copy of this email to Robert Riggs at the national Scleroderma Foundation, so that they can be made aware of your thoughts on this subject. Please feel free to call them at 1-800-722-HOPE and discuss with them further your feelings on how they are not fit to run a non-profit organization, and how you feel so strongly about this that you are posting about it in the alt.support.scleroderma newsgroup. Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages >Why would the scleroderma foundation have any interest in your site or what you >have on it? If they would get involved and take sides based on unproven >accusations by you or anyone I feel they are not fit to run a non-profit. They >have no place in such issues. Your site is a personal site as well as the >majority of the major sites online. The scleroderma foundation is not the >scleroderma net police you know. >Sounds to me like you are trying to implicate someone. Shelley you are doing >the same thing you did before. I asked you a simple question and instead of >answering that you have to attack other people online. Obviously you have a >personal problem you must address. Apple Annie wrote in message
<19991024235836.14016.00000…@ng-xa1.aol.com>… – Hide quoted text — Show quoted text ->>*Apple Annie* (and I use the term loosely, as it is not your real name)… >No Apple is not my first name you are correct. But my first name is Annie. >>I founded it, and then asked Sherry if she would be my co-founder, as I was >>pretty new to the internet. Although she agreed, and helped with some of >>the initial thought on it, I did the entire web site myself, issued all the >>invitations, and handled all of the correspondence for the SWA, from the >>get-go. Sherry did lend her name and her support to the project, which >>certainly did help this get off the ground. >Well of course I have no way of knowing the truth about this. >>Originally, Sherry and I both listed our titles as co-founders. However, >>after six months, we both deemed that the "co-founding" part of the SWA was >>done with, and we both removed the "co-founders" logos from our web sites >>and our titles. Sherry acknowledged that I was the one doing all the work >>with the SWA from the beginning, and we agreed that I would remain in charge >>of the SWA. Then I took upon myself the title of "Webmaster" since that >>most closely matched the function I was performing. >Oh ok, I get it now. You made a mistake by calling yourself the founder and not >the webmaster in the previous post? >>>2. Is it an organization as you claim in another post you just sent >>yesterday? >>Organization, association, web ring, whatever you’d like to call it *Annie*. >>It has no income whatsoever and all of the work is done by volunteers. But >>it is definitely a lot of people working together for a common cause. >>>3. Is it not just a page that you have placed links and you have asked or >>>perhaps instructed those sites to include a logo to return to this page? >>It is an association which has rules which members must follow in order to >>get and keep their membership. Some of the rules regard web site content, >>and another rule is to post the SWA logo on their site, which is linked back >>to our master listing of members. >>In return for this, the SWA offers a great many services. Although our >>primary purpose is to make it as easy as possible for people to find >>scleroderma information on the internet, we also provide many services to >>webmasters, including a mentorship program, an annual meeting, active >>promotion of the SWA and its members, and a private email list to provide >>timely support and information for webmasters. >>The full rules are posted for everyone to see at: >>http://www.sclero.org/support/swa/members/invitation.html >>>4. You stated earlier and never responded that you list "above board" >>sites. >>>Can you explain what are consider "above board sites" to you? >>Yes, that would be sites which do not indulge in any immoral, illegal or >>indecent web site content. That is one of the basic ground rules of the >>SWA. >>There has only been one site ever removed from the SWA for failure to follow >>our rule regarding no "illegal" web site content. Copyright infringements >>are illegal. There is a complete and well-documented file about this whole >>situation which has been on file with the Scleroderma Foundation for the >>past year. The copyright infringements in question were direct copies of >>over a dozen pages of my Scleroderma from A to Z web site. >Why would the scleroderma foundation have any interest in your site or what you >have on it? If they would get involved and take sides based on unproven >accusations by you or anyone I feel they are not fit to run a non-profit. They >have no place in such issues. Your site is a personal site as well as the >majority of the major sites online. The scleroderma foundation is not the >scleroderma net police you know. >Sounds to me like you are trying to implicate someone. Shelley you are doing >the same thing you did before. I asked you a simple question and instead of >answering that you have to attack other people online. Obviously you have a >personal problem you must address. >>Do you have any more questions *Apple Annie*? >I’m sure I will. I am a very inquisitive person by nature ;0) >Smiles >Apple Annie >***To reply remove "nospam" from my address*** >My favorite scleroderma and arthritis sites are…. >http://sclerodermasupport.com >http://ihavescleroderma.com >http://www.toad.net/~dreichard/ >http://arthritisnet.com
Response:
>Shelley, can you give us a brief history of the SWA? Jaimes corrected you once >about who founded it when you failed to credit Sherry and listed yourself as >the founder of it. Can you answer the following questions please?
*Apple Annie* (and I use the term loosely, as it is not your real name)… >1. Who founded, began, got it off the ground?
I founded it, and then asked Sherry if she would be my co-founder, as I was pretty new to the internet. Although she agreed, and helped with some of the initial thought on it, I did the entire web site myself, issued all the invitations, and handled all of the correspondence for the SWA, from the get-go. Sherry did lend her name and her support to the project, which certainly did help this get off the ground. Originally, Sherry and I both listed our titles as co-founders. However, after six months, we both deemed that the "co-founding" part of the SWA was done with, and we both removed the "co-founders" logos from our web sites and our titles. Sherry acknowledged that I was the one doing all the work with the SWA from the beginning, and we agreed that I would remain in charge of the SWA. Then I took upon myself the title of "Webmaster" since that most closely matched the function I was performing. >2. Is it an organization as you claim in another post you just sent
yesterday? Organization, association, web ring, whatever you’d like to call it *Annie*. It has no income whatsoever and all of the work is done by volunteers. But it is definitely a lot of people working together for a common cause. >3. Is it not just a page that you have placed links and you have asked or >perhaps instructed those sites to include a logo to return to this page?
It is an association which has rules which members must follow in order to get and keep their membership. Some of the rules regard web site content, and another rule is to post the SWA logo on their site, which is linked back to our master listing of members. In return for this, the SWA offers a great many services. Although our primary purpose is to make it as easy as possible for people to find scleroderma information on the internet, we also provide many services to webmasters, including a mentorship program, an annual meeting, active promotion of the SWA and its members, and a private email list to provide timely support and information for webmasters. The full rules are posted for everyone to see at: http://www.sclero.org/support/swa/members/invitation.html >4. You stated earlier and never responded that you list "above board" sites. >Can you explain what are consider "above board sites" to you?
Yes, that would be sites which do not indulge in any immoral, illegal or indecent web site content. That is one of the basic ground rules of the SWA. There has only been one site ever removed from the SWA for failure to follow our rule regarding no "illegal" web site content. Copyright infringements are illegal. There is a complete and well-documented file about this whole situation which has been on file with the Scleroderma Foundation for the past year. The copyright infringements in question were direct copies of over a dozen pages of my Scleroderma from A to Z web site. Do you have any more questions *Apple Annie*? Warm Hugs, Shelley Ensz, Webmaster Scleroderma Webmaster’s Association http://www.sclero.org/support/swa/a-to-z.html
Response:
My deepest apologies to those of you who are rightfully seeking support, information and comfort on the newsgroup. I’m very sorry that a few folks are repeatedly insisting on covering these unsavory topics in a public forum. Since these topics are being raised both publicly and very unfairly, with continual and undeserved assaults against my character, and have escalated to include attacks on the SF’s integrity, along with references to the SF’s legal counsel, Robert Riggs, the FBI, the SWA, and the SFM, ignoring all my pleas to handle this privately and through proper channels….well, I think it’s simply horrendous and I would urge you to spare your peace of mind, and go on to other threads which are of a more uplifting character. But for those who are gluttons for punishment and still following this thread anyway: Jaimes, could you please explain to me what on earth you mean by "why you took it upon yourself to file a report with the Federal Bureau of Investigation?" I believe you may be suffering from a tremendous amount of misinformation. Pray tell, who is telling you that I have done this? Why do they say I did this? On what grounds, what charges did I purportedly make with the FBI? And why on earth would you ever repeat such unsubstantiated lies in a patient newsgroup, of all places? Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages – Hide quoted text — Show quoted text -Sir Lafsalot wrote in message <38149FC3.BD6B9…@home.com>… >This is not about the SF; this is not about the Minnesota Chapter. This is about >you and how you have represented yourself online and the steps you have taken >toward maligning others to gain recognition and respect. >Shelley Ensz wrote: >> These are extremely serious allegations being made in a public forum, so I >> am forwarding this to the Scleroderma Foundation offices for their legal >> counsel to review. >> Shelley Ensz, Webmaster >> Scleroderma from A to Z >> http://www.sclero.org >> Now available in 10 languages >> Sir Lafsalot wrote in message <38146B83.D6BAE…@home.com>… >> >Shelley Ensz wrote: >> >> I founded it, and then asked Sherry if she would be my co-founder, as I >> was >> >> pretty new to the internet. Although she agreed, and helped with some of >> >> the initial thought on it, I did the entire web site myself, issued all >> the >> >> invitations, and handled all of the correspondence for the SWA, from the >> >> get-go. Sherry did lend her name and her support to the project, which >> >> certainly did help this get off the ground. >> >> Originally, Sherry and I both listed our titles as co-founders. However, >> >> after six months, we both deemed that the "co-founding" part of the SWA >> was >> >> done with, and we both removed the "co-founders" logos from our web sites >> >> and our titles. Sherry acknowledged that I was the one doing all the >> work >> >> with the SWA from the beginning, and we agreed that I would remain in >> charge >> >> of the SWA. Then I took upon myself the title of "Webmaster" since that >> >> most closely matched the function I was performing. >> >You took more than the title of Webmaster. Sherry mentioned to you that she >> >wanted to do a web ring. She emailed you with a link to the webring site. >> >Neither of you could make sense of how to set it up. An SDWebmaster@Yahoo >> >account was set by both of you. You wanted Sherry involved because people >> didn’t >> >know you. Sherry was so sick and couldn’t keep up with the volume of SWA >> email, >> >so you took this on under the guise of support. You used her reputation to >> >benefit yourself. What was originally a partnership became yours alone. >> >As the months passed, you shut Sherrry out completely. You closed the email >> >account you both had opened for SWA email. You did this without her >> knowledge >> >while she was having open-heart surgery. In other words, you got her help >> for >> >your benefit and then took the ball for your very own and ran with it, >> >intentionally excluding her altogether. You wanted her to give up the >> medical >> >and chapter information on her site so you could could have it. Sherry >> thanked >> >you but said she wanted to keep these elements. In retaliation for Sherry >> not >> >bending to your wishes, you closed the Yahoo account, purchased sclero.org >> and >> >forged ahead with this "competition." >> >Then you banned her from the SWA. Your words to a former webmaster: >> >"I will create my own story pages, create my own digest, my own message >> board >> >and see who gives who a run for the money." >> >Through all this, Sherry has been quiet. >> >> Annie wrote: >> >> >4. You stated earlier and never responded that you list "above board" >> sites. >> >> >Can you explain what are consider "above board sites" to you? >> >> Yes, that would be sites which do not indulge in any immoral, illegal or >> >> indecent web site content. That is one of the basic ground rules of the >> SWA. >> >> There has only been one site ever removed from the SWA for failure to >> follow >> >> our rule regarding no "illegal" web site content. Copyright >> infringements >> >> are illegal. There is a complete and well-documented file about this >> whole >> >> situation which has been on file with the Scleroderma Foundation for the >> >> past year. The copyright infringements in question were direct copies of >> >> over a dozen pages of my Scleroderma from A to Z web site. >> >I believe we ought to hear from you directly why such a file even exists. >> >How can you claim copyright infringment when information presented is not >> yours >> >to begin with? >> >I would like to know: >> >–why you took it upon yourself to initiate an investigation and why you >> feel >> >the SF should care what happens between two web sites for which they are >> not >> >responsible? >> >–why you manipulated the SF to remove SclerodermaSupport.com from their >> support >> >page? >> >–why, after Atty. Joe Pozen told you that he reviewed Sherry’s site and >> found >> >no such infringments, you did not retract your accusation? >> >–why you took it upon yourself to file a report with the Federal Bureau of >> >Investigation? >> >–why you feel Robert Riggs, who will not longer be with the SF as of >> November >> >1, 1999, is interested in your personal battles? >> >–why, after Kate (may she rest in Peace…) and Sherry willingly gave you >> all >> >this help at your request, this is your sick version of payment in kind. >> >My heart is so heavy with grief right now, none of you can imagine… >> >–Jaimes
Response:
Shelley Ensz wrote: > I founded it, and then asked Sherry if she would be my co-founder, as I was > pretty new to the internet. Although she agreed, and helped with some of > the initial thought on it, I did the entire web site myself, issued all the > invitations, and handled all of the correspondence for the SWA, from the > get-go. Sherry did lend her name and her support to the project, which > certainly did help this get off the ground. > Originally, Sherry and I both listed our titles as co-founders. However, > after six months, we both deemed that the "co-founding" part of the SWA was > done with, and we both removed the "co-founders" logos from our web sites > and our titles. Sherry acknowledged that I was the one doing all the work > with the SWA from the beginning, and we agreed that I would remain in charge > of the SWA. Then I took upon myself the title of "Webmaster" since that > most closely matched the function I was performing.
You took more than the title of Webmaster. Sherry mentioned to you that she wanted to do a web ring. She emailed you with a link to the webring site. Neither of you could make sense of how to set it up. An SDWebmaster@Yahoo account was set by both of you. You wanted Sherry involved because people didn’t know you. Sherry was so sick and couldn’t keep up with the volume of SWA email, so you took this on under the guise of support. You used her reputation to benefit yourself. What was originally a partnership became yours alone. As the months passed, you shut Sherrry out completely. You closed the email account you both had opened for SWA email. You did this without her knowledge while she was having open-heart surgery. In other words, you got her help for your benefit and then took the ball for your very own and ran with it, intentionally excluding her altogether. You wanted her to give up the medical and chapter information on her site so you could could have it. Sherry thanked you but said she wanted to keep these elements. In retaliation for Sherry not bending to your wishes, you closed the Yahoo account, purchased sclero.org and forged ahead with this "competition." Then you banned her from the SWA. Your words to a former webmaster: "I will create my own story pages, create my own digest, my own message board and see who gives who a run for the money." Through all this, Sherry has been quiet. > Annie wrote: > >4. You stated earlier and never responded that you list "above board" sites. > >Can you explain what are consider "above board sites" to you? > Yes, that would be sites which do not indulge in any immoral, illegal or > indecent web site content. That is one of the basic ground rules of the SWA. > There has only been one site ever removed from the SWA for failure to follow > our rule regarding no "illegal" web site content. Copyright infringements > are illegal. There is a complete and well-documented file about this whole > situation which has been on file with the Scleroderma Foundation for the > past year. The copyright infringements in question were direct copies of > over a dozen pages of my Scleroderma from A to Z web site.
I believe we ought to hear from you directly why such a file even exists. How can you claim copyright infringment when information presented is not yours to begin with? I would like to know: –why you took it upon yourself to initiate an investigation and why you feel the SF should care what happens between two web sites for which they are not responsible? –why you manipulated the SF to remove SclerodermaSupport.com from their support page? –why, after Atty. Joe Pozen told you that he reviewed Sherry’s site and found no such infringments, you did not retract your accusation? –why you took it upon yourself to file a report with the Federal Bureau of Investigation? –why you feel Robert Riggs, who will not longer be with the SF as of November 1, 1999, is interested in your personal battles? –why, after Kate (may she rest in Peace…) and Sherry willingly gave you all this help at your request, this is your sick version of payment in kind. My heart is so heavy with grief right now, none of you can imagine… –Jaimes
Response:
>I sincerely hope that if you want to create your own website, you will. = >Rather than feeling intimidated by the accomplishments of others.
Shelley did you read this. There really is no need to feel intimidated by accomplishments of others. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
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Here is my surfing adventure results for today. Associated disorders. http://www.sclerodermasupport.com/medical/associated/index.htm Some great information to help you manage to take your medication on time and keep them all organized. http://www.sclerodermasupport.com/medical/medication/management.htm Lung Involvement. Includes an overview by Dr. Barbara White. http://www.sclerodermasupport.com/medical/lung/index.htm Scleroderma and pregnancy http://www.sclerodermasupport.com/medical/pregnancy/index.htm Art: The Philosopher’s Stone – a poem by Ani Maserejian http://ihavescleroderma.com/pages/ani.htm Find a friend in… Sherry’s Coffeehouse http://www.sclerodermasupport.com/coffeehouse/index.htm Kate’s Post It Section http://ihavescleroderma.com/postitsd1.htm Doris Reichards Guide to Cooking With Imagination and Creativity (for people with special diets). http://www.toad.net/~dreichard/cookbook.html Doris’s recipe page http://www.toad.net/~dreichard/recipes.html I will take my surfing shoes off for tonight but they are just in my closet by the computer so I’ll get them back out tomorrow. Now I am off archive hunting for those questions I promised Shelley. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
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Annie, thank you for the history lesson, and for sharing with us so many wonderful links. Your devotion to the few original scleroderma sites is most commendable. However, I’m sure those webmaster’s would be among the very first to jump in and tell you that, thanks in large part to their inspiration, there are now hundreds of scleroderma sites on the net, which they dearly love to link to themselves, and for which they take great joy in having served to inspire. So my "short list" of sites is actually a very, very long one, as I’ve found every scleroderma site in the world to have something special and unique to contribute. Many (but certainly not all of them) of those are listed in the "Scleroderma Sites to Surf!" which is a free service of the Scleroderma Webmaster’s Association, at: http://www.sclero.org/support/swa/a-to-z.html As far as longevity of the sites go, I cherish the brand new sites right along with the oldies but goodies…the large ones along with the small ones…the patient sites as well as the doctor’s sites…we are all so very blessed with such an abundant and thriving online community. I’m just as indebted to those who homesteaded scleroderma on the net, as I am to those who are paving the way for the future. We haven’t even scratched the scratch yet of what can be done for scleroderma patients and caregivers throughout the world — as all of the scleroderma webmasters will tell you, it is an enormous task, and not one which can be achieved with just one site, or ten sites, or even a hundred sites. Warm Hugs, Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages Visit "Scleroderma Sites to Surf!" at http://www.sclero.org/support/swa/a-to-z.html Email: s…@sclero.org
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These are extremely serious allegations being made in a public forum, so I am forwarding this to the Scleroderma Foundation offices for their legal counsel to review. Shelley Ensz, Webmaster Scleroderma from A to Z http://www.sclero.org Now available in 10 languages – Hide quoted text — Show quoted text -Sir Lafsalot wrote in message <38146B83.D6BAE…@home.com>… >Shelley Ensz wrote: >> I founded it, and then asked Sherry if she would be my co-founder, as I was >> pretty new to the internet. Although she agreed, and helped with some of >> the initial thought on it, I did the entire web site myself, issued all the >> invitations, and handled all of the correspondence for the SWA, from the >> get-go. Sherry did lend her name and her support to the project, which >> certainly did help this get off the ground. >> Originally, Sherry and I both listed our titles as co-founders. However, >> after six months, we both deemed that the "co-founding" part of the SWA was >> done with, and we both removed the "co-founders" logos from our web sites >> and our titles. Sherry acknowledged that I was the one doing all the work >> with the SWA from the beginning, and we agreed that I would remain in charge >> of the SWA. Then I took upon myself the title of "Webmaster" since that >> most closely matched the function I was performing. >You took more than the title of Webmaster. Sherry mentioned to you that she >wanted to do a web ring. She emailed you with a link to the webring site. >Neither of you could make sense of how to set it up. An SDWebmaster@Yahoo >account was set by both of you. You wanted Sherry involved because people didn’t >know you. Sherry was so sick and couldn’t keep up with the volume of SWA email, >so you took this on under the guise of support. You used her reputation to >benefit yourself. What was originally a partnership became yours alone. >As the months passed, you shut Sherrry out completely. You closed the email >account you both had opened for SWA email. You did this without her knowledge >while she was having open-heart surgery. In other words, you got her help for >your benefit and then took the ball for your very own and ran with it, >intentionally excluding her altogether. You wanted her to give up the medical >and chapter information on her site so you could could have it. Sherry thanked >you but said she wanted to keep these elements. In retaliation for Sherry not >bending to your wishes, you closed the Yahoo account, purchased sclero.org and >forged ahead with this "competition." >Then you banned her from the SWA. Your words to a former webmaster: >"I will create my own story pages, create my own digest, my own message board >and see who gives who a run for the money." >Through all this, Sherry has been quiet. >> Annie wrote: >> >4. You stated earlier and never responded that you list "above board" sites. >> >Can you explain what are consider "above board sites" to you? >> Yes, that would be sites which do not indulge in any immoral, illegal or >> indecent web site content. That is one of the basic ground rules of the SWA. >> There has only been one site ever removed from the SWA for failure to follow >> our rule regarding no "illegal" web site content. Copyright infringements >> are illegal. There is a complete and well-documented file about this whole >> situation which has been on file with the Scleroderma Foundation for the >> past year. The copyright infringements in question were direct copies of >> over a dozen pages of my Scleroderma from A to Z web site. >I believe we ought to hear from you directly why such a file even exists. >How can you claim copyright infringment when information presented is not yours >to begin with? >I would like to know: >–why you took it upon yourself to initiate an investigation and why you feel >the SF should care what happens between two web sites for which they are not >responsible? >–why you manipulated the SF to remove SclerodermaSupport.com from their support >page? >–why, after Atty. Joe Pozen told you that he reviewed Sherry’s site and found >no such infringments, you did not retract your accusation? >–why you took it upon yourself to file a report with the Federal Bureau of >Investigation? >–why you feel Robert Riggs, who will not longer be with the SF as of November >1, 1999, is interested in your personal battles? >–why, after Kate (may she rest in Peace…) and Sherry willingly gave you all >this help at your request, this is your sick version of payment in kind. >My heart is so heavy with grief right now, none of you can imagine… >–Jaimes
Response:
This is not about the SF; this is not about the Minnesota Chapter. This is about you and how you have represented yourself online and the steps you have taken toward maligning others to gain recognition and respect. – Hide quoted text — Show quoted text -Shelley Ensz wrote: > These are extremely serious allegations being made in a public forum, so I > am forwarding this to the Scleroderma Foundation offices for their legal > counsel to review. > Shelley Ensz, Webmaster > Scleroderma from A to Z > http://www.sclero.org > Now available in 10 languages > Sir Lafsalot wrote in message <38146B83.D6BAE…@home.com>… > >Shelley Ensz wrote: > >> I founded it, and then asked Sherry if she would be my co-founder, as I > was > >> pretty new to the internet. Although she agreed, and helped with some of > >> the initial thought on it, I did the entire web site myself, issued all > the > >> invitations, and handled all of the correspondence for the SWA, from the > >> get-go. Sherry did lend her name and her support to the project, which > >> certainly did help this get off the ground. > >> Originally, Sherry and I both listed our titles as co-founders. However, > >> after six months, we both deemed that the "co-founding" part of the SWA > was > >> done with, and we both removed the "co-founders" logos from our web sites > >> and our titles. Sherry acknowledged that I was the one doing all the > work > >> with the SWA from the beginning, and we agreed that I would remain in > charge > >> of the SWA. Then I took upon myself the title of "Webmaster" since that > >> most closely matched the function I was performing. > >You took more than the title of Webmaster. Sherry mentioned to you that she > >wanted to do a web ring. She emailed you with a link to the webring site. > >Neither of you could make sense of how to set it up. An SDWebmaster@Yahoo > >account was set by both of you. You wanted Sherry involved because people > didn’t > >know you. Sherry was so sick and couldn’t keep up with the volume of SWA > email, > >so you took this on under the guise of support. You used her reputation to > >benefit yourself. What was originally a partnership became yours alone. > >As the months passed, you shut Sherrry out completely. You closed the email > >account you both had opened for SWA email. You did this without her > knowledge > >while she was having open-heart surgery. In other words, you got her help > for > >your benefit and then took the ball for your very own and ran with it, > >intentionally excluding her altogether. You wanted her to give up the > medical > >and chapter information on her site so you could could have it. Sherry > thanked > >you but said she wanted to keep these elements. In retaliation for Sherry > not > >bending to your wishes, you closed the Yahoo account, purchased sclero.org > and > >forged ahead with this "competition." > >Then you banned her from the SWA. Your words to a former webmaster: > >"I will create my own story pages, create my own digest, my own message > board > >and see who gives who a run for the money." > >Through all this, Sherry has been quiet. > >> Annie wrote: > >> >4. You stated earlier and never responded that you list "above board" > sites. > >> >Can you explain what are consider "above board sites" to you? > >> Yes, that would be sites which do not indulge in any immoral, illegal or > >> indecent web site content. That is one of the basic ground rules of the > SWA. > >> There has only been one site ever removed from the SWA for failure to > follow > >> our rule regarding no "illegal" web site content. Copyright > infringements > >> are illegal. There is a complete and well-documented file about this > whole > >> situation which has been on file with the Scleroderma Foundation for the > >> past year. The copyright infringements in question were direct copies of > >> over a dozen pages of my Scleroderma from A to Z web site. > >I believe we ought to hear from you directly why such a file even exists. > >How can you claim copyright infringment when information presented is not > yours > >to begin with? > >I would like to know: > >–why you took it upon yourself to initiate an investigation and why you > feel > >the SF should care what happens between two web sites for which they are > not > >responsible? > >–why you manipulated the SF to remove SclerodermaSupport.com from their > support > >page? > >–why, after Atty. Joe Pozen told you that he reviewed Sherry’s site and > found > >no such infringments, you did not retract your accusation? > >–why you took it upon yourself to file a report with the Federal Bureau of > >Investigation? > >–why you feel Robert Riggs, who will not longer be with the SF as of > November > >1, 1999, is interested in your personal battles? > >–why, after Kate (may she rest in Peace…) and Sherry willingly gave you > all > >this help at your request, this is your sick version of payment in kind. > >My heart is so heavy with grief right now, none of you can imagine… > >–Jaimes
Response:
>Lynn, in your response to Annie, you hit the nail on the head. There’s >nothing that any of us webmasters would love more than for there to be >hundreds of more scleroderma sites on the Internet. That’s why we have >organizations such as the SWA, which has a complete mentorship program to >help anyone who wants to start a scleroderma website.
Oh so it is an organization???? – Hide quoted text — Show quoted text ->There are many of us who feel that our job on the internet has only just >begun, and who will not rest until there is support and information for >every scleroderma patient and caregiver in the world. Therefore, we are >working very hard with the international community and in making translated >materials available. It is shocking how little scleroderma information and >support is available in some countries. >Right now, we are working with translators to establish support >organizations in Romania and Malaysia. Every day, I get emails from every >corner of the globe. There’s so much work to be done on the >Internet…although we should cherish the work which everyone has done so >far, we should never try to discourage the growth and expansion of >scleroderma services on the Internet, or consider that all of our work is >done, while there are still too many people in suffering in darkness and in >pain, isolated from other patients and often even from society as a whole >due to disfigurement or severe disability. >Warm Hugs, >Shelley Ensz, Webmaster
me, me, me. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
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>Lets not forget Doris, Ed and a few others who have contributed to our >common cause for being together…..sd and other chronic illnesses.
I did mention Doris’s site. I apologize for leaving Ed out. I understand that he has been putting that fabulous FAQ out for a long time. Thank you Ed. Smiles Apple Annie ***To reply remove "nospam" from my address*** My favorite scleroderma and arthritis sites are…. http://sclerodermasupport.com http://ihavescleroderma.com http://www.toad.net/~dreichard/ http://arthritisnet.com
no comment untill now