June 2009 ISN Donation and Website News |
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| (Finnish/Suomi) Tervetuloa Emmi Myohanen, ISN Kääntäjä (Suomi) |
| Emmi Myohanen: ISN kääntäjä (suomi). Hei, nimeni on Emmi ja olen opiskelija Suomesta, teidän ISN kääntäjänne (suomi). Minulla diagnosoitiin paikallinen skleroderma kun olin 6 vuotta vanha, 1996. Olen möys Suome skleroderma yhdistyksen sihteeri, joka on ISN:n yhteistyökumppani. Posted 07/13/09. |
| Welcome to Emmi Myohanen, ISN Finnish Translator |
| Emmi Myohanen: ISN Finnish Translator. Hi there, my name is Emmi and I'm a student from Finland, your ISN Finnish Translator. I was diagnosed with localized scleroderma when I was only 6 years old, in 1996. I am also the secretary of The Finnish Scleroderma Association, which is an ISN Affiliate. Posted 07/13/09. |
| ISN Thanks Christopher Shepard for his Voices of Scleroderma Book Series Order! |
 Thanks to Christopher Shepard for his Voices of Scleroderma book series order! You too can cuddle up with our scleroderma heroes as we regale our courageous battle with "the disease that turns people to stone." Laugh with our inspiring whimsy, and clutch our steadfast warmth to your heart. Embrace the knowledge no matter what befalls you, we understand, and you are not alone. Snatch up the sale price now, regularly $25.00 -- now only $14.99 each, only when ordered directly from the ISN, while supplies last! Posted 06/29/09. |
| New ISN Page: Vascular Involvement |
| Vascular Involvement in Systemic Scleroderma. Vascular disease in scleroderma can be widespread throughout the body. In effect, vascular disease can affect any organ or any part of the body by affecting the circulation of blood to and from or within. Examples are Raynaud's Phenomenon, Pulmonary Arterial Hypertension, and Renal Involvement. By Janey Willis, ISN Guide to Vascular Involvement. Posted 06/26/09. |
| Welcome to Emmi Myohanen, ISN Finnish Translator |
| Emmi Myohanen: ISN Finnish Translator. Hi there, my name is Emmi and I'm a student from Finland, your ISN Finnish Translator. I was diagnosed with localized scleroderma when I was only 6 years old, in 1996. I am also the secretary of The Finnish Scleroderma Association, which is an ISN Affiliate. Posted 06/26/09. |
| In Loving Memory of Robert Brian Mooney |
 The nonprofit International Scleroderma Network thanks David and Carol Lindenbaum for their comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses, in loving memory of Robert Brian Mooney. Posted 06/24/09. (Also see: Donate in Memory) |
| In Honor of Kim Thwaits |
| The nonprofit International Scleroderma Network (ISN) thanks Winn and Robert Schillberg for their research donation which was made in honor of Kim Thwaits. Our ISN research fund supports peer-reviewed clinical trials conducted by the nonprofit Scleroderma Clinical Trials Consortium. Posted 06/19/09. (Also see: Donate) |
| Aaron Ahonen is Tackling Scleroderma Now! |
 The nonprofit International Scleroderma Network thanks Aaron Ahonen for his scleroderma awareness bracelet order! Posted 06/18/09. (Also see: Donate/Shop) |
| Join the Excitement! Sponsor Lisa's Soccer Tournament! |
 Scoring for Scleroderma 4th Annual Fundraiser to benefit the nonprofit International Scleroderma Network is off to a great start! Join Silver Sponsors, Gene and Shelley Ensz, in providing booster support to Lisa Bulman's incredible 4th Annual Scoring for Scleroderma Women's Soccer Tournament which will be held this Friday, June 19th in Canton, Massachusetts! Posted 6/17/09. Donate Now! |
| Excitement is Building for ISN Scoring for Scleroderma 4th Annual Fundraiser by Lisa Bulman! |
| Scoring for Scleroderma 4th Annual Fundraiser to benefit the nonprofit International Scleroderma Network is off to a great start! The Scoring for Scleroderma fundraiser, which is a women's soccer tournament, is scheduled for June 19th. Our indoor fields, located at the Canton Sports Plex, in Canton, Massachusetts have been donated! We are expecting at least 50 to 60 people to participate as well as other goods to be donated, such as water and soccer balls. We are all very excited and looking forward to this being another great success! Register as a Soccer Player here. Posted 6/11/09 by Lisa Bulman, ISN Fundraiser. |
| Damany Phifer is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Damany Phifer for her scleroderma awareness bracelet order! Posted 06/11/09. (Also see: Donate/Shop) |
| Sclero.org featured on Killerstartups.com! |
| Killerstartups.com recently featured sclero.org! They review 15+ internet startups per working day. Vote for the one you think will be a killer. "This health care website is dedicated to those who suffer from this rare form of arthritis or for the other ones who need to be informed about scleroderma. Whether you are a patient or a physician, you should pay this portal a visit to learn more about treatments." Posted 06/09/09. |
| Thanks to Kathy Baxter and United Way! |
| The nonprofit International Scleroderma Network thanks Kathy Baxter for her comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses, through United Way. Posted 06/08/09. (Also see: Donate) |
| Thanks to Patricia Ethier for her Car Donation! |
 The nonprofit International Scleroderma Network thanks Patricia Ethier for her 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 06/08/09. (Also see: Donate Your Vehicle)
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| Janey Willis: ISN News Director |
| Janey Willis has been promoted to ISN News Director. Janey has worked as a News Guide for over 3 years and as News Manager for over a year. She is also ISN Assistant Webmaster, actively helping to maintain and update the ISN website, among many other positions. Posted 06/08/09. |
| Debra Runge is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Debra Runge for her scleroderma awareness bracelet order! Posted 06/05/09. (Also see: Donate/Shop) |
| In Loving Memory of Judy Tarro |
| 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 Judy Tarro: Helen Christina, Gene and Shelley Ensz, Jo and Ron Gledhill, Keith Gledhill, Carrie Maddoux, Donald Christina, Janey Willis. Reposted 06/05/09. (Also see: Donate in Memory and Judy Tarro) |
| 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. Reposted 06/02/09. (Also see: ISN Tony Varghese) |
| ISN Scoring for Scleroderma 4th Annual Fundraiser by Lisa Bulman! |
| Scoring for Scleroderma 4th Annual Fundraiser to benefit the nonprofit International Scleroderma Network is off to a great start! The Scoring for Scleroderma fundraiser, which is a women's soccer tournament, is scheduled for June 19th. Our indoor fields, located at the Canton Sports Plex, in Canton, Massachusetts have been donated! We are expecting at least 50 to 60 people to participate as well as other goods to be donated, such as water and soccer balls. We are all very excited and looking forward to this being another great success! Register as a Soccer Player here. Posted 6/02/09 by Lisa Bulman, ISN Fundraiser. |
| 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. Reposted 06-02-09. |
| 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 06-02-09. |
| In Loving Memory of Kim Tippy |
| The nonprofit International Scleroderma Network thanks Gene and Shelley Ensz for their comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses, in loving memory of Kim Tippy. Posted 06/02/09. (Also see: Donate in Memory) |
| Donate Your Car/Truck/Motorcycle/Boat! |
The nonprofit International Scleroderma Network accepts 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 06/02/09. (Also see: Donate Your Vehicle) |
| Welcome to new ISN Affiliate, Scleroderma Society U.K. |
 We welcome the newest ISN Affiliate: Scleroderma Society U.K. You do not have to be a member of the Scleroderma Society to use the ISN's Sclero Forums Scleroderma Society U.K. sub forum which is led by Amanda Thorpe, and now available thanks to their affiliation with ISN. Posted 06/02/09. |
| 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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