| April 2009 ISN Donation and Website News |
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| New Sclero YouTube: Tour of Sclero.org! |
New Sclero YouTube: Tour of SCLERO.ORG! Enjoy this video tour of the website and services provided by the nonprofit International Scleroderma Network. The video was created by Tony and Suzanna Varghese. Tony serves on the ISN Board of Directors. Posted 04-27-09. |
| Gene Talk: What do we expect from Families and their Doctors? |
 Gene Talk Survey: What do we expect from Families and their Doctors? is a US national study sponsored and funded by the National Institute of Health. The purpose of the study is to collect thoughts, opinions, and beliefs from patients and providers about who has responsibility for sharing genetic risk information within families, and when it is morally acceptable not to share information. This mailed survey will present 12 short stories about different ways providers and patients might react to situations that might involve sharing genetic information with family members. Each brief story is followed by 2 questions. The entire survey takes about 15 minutes to complete. Oregon Health Sciences University. Posted 04-27-09. |
| In Loving Memory of Tom Regensburger |
 The nonprofit International Scleroderma Network thanks the following people for their comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses, in loving memory of Tom Regensburger: Dee Gable, Sara Foret, Thomas Furey, Justine and Edward Handing, Robert Klimm, William R. Johnson Sr., Robert Marant, Ilene Martin, Robert and Deborah Moore, Mary Regensburger, Ryan Regensburger, Sally Ross and Don DeBonce, Joan Ruhl, Christine Srock, Paula Stoll, Jill Swiatowicz, Raymond Weil and Diane Wilkoff. Posted 04/23/09. (Also see: Donate in Memory) |
| Emilia Pitrelli is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Emilia Pitrelli for her new or renewing ISN Membership, which helps tackle research, support, education and awareness for scleroderma and related illnesses. Posted 04-17-09. (Also see: Donate/Shop) |
| Lenore Mickelson is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Lenore Mickelson for her new or renewing ISN Membership, which helps tackle research, support, education and awareness for scleroderma and related illnesses. Posted 04-17-09. (Also see: Donate/Shop) |
| Elizabeth Burns is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Elizabeth Burns for her new or renewing ISN Membership, which helps tackle research, support, education and awareness for scleroderma and related illnesses. Posted 04-17-09. (Also see: Donate/Shop) |
| Welcome Penny Roar: ISN Sclero Forums Blogger |
| Hello, I am Penny Roar, a new ISN Blogger. I have not been diagnosed with scleroderma at this time, though I do have Sjogren's and Hashimoto's Thyroiditis as well as face many of the pulmonary, cardiac and gastric issues that seem to plague so many of us. Visit my Sclero Forums blog, My Two Cents (Good Penny, Bad Penny). Posted 04-14-09. |
| New ISN Page: Marriage and Health |
| Marriage and Health. Marriage, like any type of relationship can affect your health. Studies have shown that a bad marriage can have a negative effect on your health while a good marriage can have a positive effect. Our new page on marriage and its effects on our health will continue to explore this issue and bring you the latest news. Posted 04/03/09. |
| Thanks to Kurt Rogers for his Car Donation! |
 The nonprofit International Scleroderma Network thanks Kurt Rogers for his donation of a car! We accept cars, trucks, motorcycles, snowmobiles and boats -- from the U.S. and Canada. To donate your vehicle, please call toll free 1-877-537-5277. Donate for "ISN". International Scleroderma Network, www.sclero.org. Posted 04/03/09. (Also see: Donate Your Vehicle)
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| In Loving Memory of Shirley Janiece Glassman |
The nonprofit International Scleroderma Network thanks Sally Beth Dougherty for her comprehensive donation to tackle scleroderma research, support, education and awareness in loving memory of her daughter, Shirley Janiece Glassman. (Also see: Donate/Shop) |
| Vera Lonergan is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Vera Lonergan for her ISN Membership Renewal, which tackles comprehensive donation to tackle research, support, education and awareness for scleroderma and related illnesses. Posted 04-03-09. (Also see: Donate/Shop) |
| Thanks to Charitable Auto Resources |
The nonprofit International Scleroderma Network thanks Charitable Auto Resources for processing Kurt Roger's vehicle donation. We accept cars, trucks, motorcycles, snowmobiles and boats -- from the U.S. and Canada. To donate your vehicle, please call toll free 1-877-537-5277. Donate for "ISN". International Scleroderma Network, www.sclero.org. Posted 04/03/09. (Also see: Donate Your Vehicle) |
| Margaret Roof is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Margaret Roof for her comprehensive donation to tackle research, support, education and awareness for scleroderma and related illnesses. Posted 04-03-09. (Also see: Donate/Shop) |
| Actelion Pharmaceuticals is Tackling Scleroderma Now! |
 The International Scleroderma Network thanks Actelion Pharmaceuticals for their generous grant to tackle scleroderma and pulmonary hypertension now! Reposted 04-03-09. |
| Pampered Chef Online Fundraiser! |
| Lisa Bulman's Pampered Chef Fundraiser was a great success, raising over $750 for the nonprofit International Scleroderma Network! Special thanks to Pampered Chef Consultant Christine McMahon and to everyone who ordered products! Posted 04/03/09. (Also see: Lisa Bulman: ISN Fundraiser) |
| New Personal Stories |
| Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end... |
| (Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia... |
| (Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was... |
| Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information... |
| More New Stories: August-November 2009 |
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