ISN Donation and Web Site News |
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| May 2007 |
| Raising Scleroderma Awareness in May 2007! |
| The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as books, brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Reposted 05-31-07. (Also see: ISN Secure Shops) |
Joseph Agro
Gizelle Bernier
Nan Blackwell
Kristina Blake
Stacie Brink
Susan Campbell
Lori Carn
Patty Crane
Jose de Carlos
Sarah Cornelius
Elena Farina
Julie Ford
Kristi Forman
Derrick Harge
Claudia Hilburn
Margaret Jackson
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Anna Johnson
Jacklyn LaPerriere
Jason Lee
Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
April Quate
Samantha Rudesill
Toni Spangle
Suzanne Verschneider
Christina Wilson
Michelle Zagorski |
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| Pulmonary Hypertension Registry of Scleroderma by SCTC |
| Pulmonary Hypertension Registry of Scleroderma (PHAROS) is a multicenter study of systemic scleroderma (systemic sclerosis) patients in the United States. Reposted 05/26/07. (Also see: Pulmonary Hypertension) |
| SCOT Trial: Open Enrollment, 2005-2008 |
| SCOT Clinical Trial, which stands for "Scleroderma Cyclophosphamide Or Transplantation", will compare two potential therapies: autologous stem cell transplantation versus high-dose monthly cyclophosphamide. Study dates 2005-2008. Reposted 05/06/07. (Also see: Scleroderma Clinical Trials: Current, Cyclophosphamide, Cytoxan and Stem Cell Transplantation) |
| NIH: Now Enrolling for Family/Twin Study |
| Families with Twins or Siblings where one has Systemic Rheumatic Disorders (Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lupus, Scleroderma, or Myositis) and one does not. For information on the study, call the NIH patient recruiting office toll free at 1-800-411-1222 (For TTY: 1-866-411-1010). National Institutes of Health Clinical Center (NIH). Reposted 05/26/07. (Also see: Clinical Trial Open Enrollments, Scleroderma Research Registries and Causes of Scleroderma: Genetics ) |
| In Loving Memory of Jack Christiansen |
| The International Scleroderma Network thanks to the following people for their comprehensive donations to tackle scleroderma research, support, education and awareness in loving memory of Jack Christiansen. Re-posted 05-26-07. (Also see: Donate in Memory of Jack Christiansen and ISN Donations in Loving Memory) |
Mr. and Mrs. Wm. Annen
Georgia Beston
Richard Christiansen
Mr. and Mrs. Ray Gross |
Illinois Tool Works Foundation
Anne McCormick
Shirley Mjoen
Mr. and Mrs. Richard Revor |
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| ISN Volunteer Wanted: Polish/English Translator |
| We have an immediate opening for a volunteer to edit and translate scleroderma patient and caregiver stories from Polish to English. Usually this would be about 2 stories per year, plus some email correspondence. Interested? Please send an email to volunteers@sclero.org. Posted 05/25/07. |
| Raising Scleroderma Awareness Now! |
| The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Reposted 05-03-07. (Also see: ISN Secure Shops) |
Joseph Agro
Nan Blackwell
Susan Campbell
Lori Carn
Julie Ford
Margaret Jackson
Thomas Lukcso
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Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
Samantha Rudesill
Christina Wilson |
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| Carrie Maddoux: ISN Sclero Forums Manager |
| Carrie Maddoux: ISN Sclero Forums Manager. Carrie has been promoted from Support Specialist to Manager for the ISN Sclero Forums. Carrie, also known as Jefa, has been an active member of the ISN Forums since its beginning in October 2006. We thank her for her desire to contribute even more support to this family of friends. Posted 05-16-07 (Also see: Sclero Forums) |
| Carrie Maddoux: ISN Support Specialist for Sclero Forums |
| Carrie Maddoux: ISN Support Specialist. The real people who are posting in ISN's Sclero Forums suddenly become that much closer when we start posting too. I am glad you have found us, and hope that you will find as much support here as I have. I am a retired electronics production manager/manufacturing engineer living near Glasgow, Scotland with my husband, Jim, and our whitefaced cockatiel, Poirot. We both write novels, short stories and poetry and before I became ill, I edited two literary journals. Posted 05-07-07. (Also see: Sclero Forums) |
| Erin Eton: ISN Support Specialist for Sclero Forums |
| Erin Eton: ISN Support Specialist. I am very honored to be a part of the International Scleroderma Network's Sclero Forums because of the hope and support that it brings to such a wide range of people. I am a mother, wife and graphic designer. My desire is to support those affected by scleroderma and related illnesses with a positive outlook, friendship, and firsthand experience that others can relate to. Posted 05-07-07. (Also see: Sclero Forums) |
| Thank You to Lisa Bulman's Pampered Chef Party for Scleroderma! |
| Lisa Bulman's Pampered Chef Party raised over $750 for the nonprofit International Scleroderma Network! Special thanks go to Lisa Bulman, Doris Christopher, Christine McMahon (Consultant), Pampered Chef, as well as to Carol Webber, Lee Brazad, and everyone who purchased products. The proceeds help us tackle stellar worldwide research, support, education and awareness for scleroderma and related illnesses. Thank you! Posted 05/03/07. (Also see: Lisa Bulman, ISN Fundraiser) |
| In Loving Memory of Jack Christiansen |
| The International Scleroderma Network thanks Georgia Beston for her comprehensive donation to tackle scleroderma research, support, education and awareness in loving memory of Jack Christiansen. Posted 05-01-07. (Also see: Donate in Memory of Jack Christiansen and ISN Donations in Loving Memory) |
| Actelion Launches Sure Steps Patient Education and Support Program |
| Actelion Pharmaceuticals US, Inc. is pleased to announce the launch of Sure StepsTM, a comprehensive support program for U.S. patients enrolled in the Tracleer Access Program (T.A.P.). Sure StepsTM free services include one-to-one attention from a Nurse Counselor. Reposted 05-01-07. (Also see: Bosentan/Tracleer) |
| Also see: Join ISN, ISN Members, and More ISN News: April 2007. |
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