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| Shelley Ensz | | Founder and President of the International Scleroderma Network | | I wish I could say "Thank You" in 22 languages! |  I'm thrilled with the fabulous team spirit of our international scleroderma community!
From our launch on January 21, 2002, the International Scleroderma Network (ISN) has been blessed with dozens of very talented people who lend their expertise and open their hearts to those affected by scleroderma and related illnesses, throughout the world. The ISN is a fitting outgrowth of the SCLERO.ORG website that I launched on January 7, 1998. From one humble page of scleroderma links, it has blossomed to over 2,222 pages in 22 languages. This has been made possible with dozens of amazing worldwide volunteers. The ISN is dedicated to empowering people who are interested in scleroderma, by providing medical and support information in many languages. Our new book series, Voices of Scleroderma, has been entirely created and produced by our web site visitors and volunteers. Each volume of Voices of Scleroderma features over 100 patient and caregiver stories, in five languages, representing 16 countries. I'm Founder and President of the International Scleroderma Network (ISN), the SCLERO.ORG website, the Scleroderma Webmaster's Association (SWA), EdinaWebDesign.com ; and co-editor of the Voices of Scleroderma book series along with Judith Thompson Devlin. I live in Edina, Minnesota with my wonderful husband, Gene Ensz, who is ISN Vice President. I am also ISN Webmaster, and an ISN Artist. My drawings, paintings, and photography illustrate many of the medical and patient stories on this site. | | | Related Articles | | Earl Mann's Family Visits Sclero.org! | | The Earl Mann's Family visited ISN headquarters in Minnesota, following completion of his second marathon-running ISN fundraiser in Missoula, Montana. Pictured from left are his wife, Lanie; Shelley Ensz, ISN Founder and President; Earl Manns, ISN Fund Raiser, and their daughters Faith, Mya and Madison. (Also see Earl Manns.) Posted 07/21/08. | | Shelley Ensz: Book Signings at Panera Bread in Twin Cities | Shelley Ensz, Founder and President of the International Scleroderma Network and Co-Editor of the Voices of Scleroderma Book Series, will be doing public book signings for all 3 volumes at: Panera Bread in Minnesota from 10:30am-2:00pm :
May 9, 2006 (Tue) Knollwood Mall, St. Louis Park
June 5, 2006 (Mon) Yorktown Mall, Edina
June 22, 2006 (Thu) 3808 Grand Way, St. Louis Park
July 6, 2006 (Thu) 8251 Flying Cloud Dr, Eden Prairie
Help raise awareness of scleroderma: bring your friends and family! Books will be available for purchase. Reposted 04-25-06. | | | Voices of Scleroderma Volume 3: Just Released! | | Voices of Scleroderma Volume 3 has just been released, with 100 more new patient and caregiver stories! Contributing professionals include Dr. Marco Matucci-Cerinic and Dr. Irene Miniati (on Systemic Scleroderma), Dr. Fernanda Falcini (on Juvenile Scleroderma), Dr. Tafazzul e-Haque Mahmud, Dr. Laszlo Czirjak (on Scleroderma-Like Disorders), Dr. James Seibold, Francisco Castellanos, and Carol Langenfeld. Posted 01-24-06. | | ISN Celebrates its 4th Anniversary! | | The nonprofit International Scleroderma Network celebrated its 4th anniversary on January 21, 2006. The nonprofit agency is an outgrowth of the ever-popular grassroots SCLERO.ORG website, which is now in it's 8th year of operation. Posted 01-23-06. (Also see: ISN Membership) | | ISN Celebrates its 3rd Anniversary! | The International Scleroderma Network celebrates it's 3rd anniversary on Friday, January 21, 2005! The nonprofit ISN was launched on 1-21-02, from the outgrowth of the Sclero.org website which was founded on 1-7-98 by Shelley Ensz. The ISN operates the 1200+ page sclero.org website in 20 languages, publishes the Voices of Scleroderma book series, supports international peer-reviewed research in collaboration with the Scleroderma Clinical Trials Consortium, manages the 800+ member Sclero MSN online support community, publishes the ISN Insider newsletter for members, offers a tollfree hotline, and works to unite the online scleroderma community through leading the Scleroderma Webmaster's Association and it's popular "Scleroderma Sites to Surf !" program. This is all made possible through the amazing international grassroots collaboration of thousands of scleroderma patients, caregivers, supporters, researchers, site visitors, members, donors, volunteers, medical advisors and board members who work together via the internet to drive top quality information and support to the farthest corners of the globe. Posted 01-20-05. (Also see: ISN Donors) | | Shelley Ensz: Book Signing in Edina, Minnesota | Shelley Ensz, Founder and President of the International Scleroderma Network and Co-Editor, signed Voices of Scleroderma Volume 1 books at the Panera restaurant in Yorktown Mall in Edina, Minnesota, on Monday, March 22, 2004, from 10am-2pm. "I was amazed by how many restaurant visitors said they had relatives or friends with scleroderma," she said. ISN posters, brochures and business cards are now available in PDF format for volunteers who would like to do similar displays. Email shelley-ensz@sclero.org for more information. | | Contact Information | | Please do not add me to unsolicited mailings or databases. | | Email & Postal Mail | Phone | shelley-ensz@sclero.org Shelley Ensz
International Scleroderma Network
7455 France Av S #266
Edina, MN 55435 | Shelley Ensz
International Scleroderma Network
Toll Free: 1-800-564-7099
Direct: 952-831-3091 (U.S.)
(English-speaking only)
If you get the answering machine, please leave a complete message, including your country code if you are calling from outside the U.S. | | | Related Links | | Internet as a Tool for Patient Support Groups to Provide Quality Information. AIM: To compare the inquiries received by the Scleroderma Society (SS), UK with those received by the International Scleroderma Network (ISN). Worldwide collaboration of medical professionals with patient organisations should lead to a better understanding of clinical needs and better support. Web presence and e-mail contacts should be used by patient organisations in order to improve the quality and availability of support. M. Dziadzio. SL0003 EULAR 2004. (Also see: ISN, Dr. Magdalena Dziadzio, Dr. Roy Smith, Prof. Carol Black, and Shelley Ensz) | | Voices of Scleroderma Book Series by Judith Thompson Devlin and Shelley L. Ensz for the International Scleroderma Network. (Also see: Judith Thompson Devlin) | | A Pilot Database Analysis of Enquiries Submitted to the Medical Committee of an International Scleroderma Website This pilot database analysis identifies the main areas of information that should be available to those affected by, or working with, scleroderma. Magdalena Dziadzio FRI0078 EULAR 2003. (Also see: ISN, Dr. Magdalena Dziadzio, Dr. Roy Smith, and Prof. Carol Black) | | Vaginal Lubrication in Women with Scleroderma and Sjogren's Syndrome. Sexual difficulties are often experienced by women with scleroderma, particularly those with Sjogren's syndrome. S. Chris Saad, Ph.D, J.E. Pietrzykowski, Sheila S. Lewis, B.S., Arlene M. Stepien, M.S.N., R.N.C., Virginia Anne Latham, R.N., B.S., Shelley L. Ensz, Carol Wetherell, and Andrew E. Behrendt, Ph.D. Expired link. Sexuality and Disability, Vol. 17, No. 2, ISSN 0146-1044, Kluwer Academic, Summer 1999. (Also see: Sjogren's, and Sexuality and Scleroderma) | | | Keep on Surfing! | | Go to Foster, Dr. C. Stephen | |
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