May 2009 ISN Donation and Website News |
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| Anonymous Donor is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks an anonymous donor for their comprehensive donation to help tackle research, support, education and awareness for scleroderma and related illnesses. Posted 05-28-09. (Also see: Donate/Shop) |
| In Loving Memory of Judy Tarro: Her Obituary |
 Judy Tarro's obituary. "Judy passed on after a lifetime struggle with scleroderma. She is the founder of sdworld.org and SD World email list. Through her work she provided steadfast support, good humor, and friendship. Judy thus paved the way for the founding of the nonprofit agency and resulting website, which is now 5,000 pages in 23 languages. Judy continued faithfully volunteering as an ISN Assistance News guide up until a few days before her death. She was a huge presence and leader in the precious online community; her fabulous spirit and her work will always be remembered and cherished. Judy's story of living with scleroderma is featured in the ISN's book, “Voices of Scleroderma”, Volume 3." Read more. Posted 05/28/09. (Also see: Donate in Memory and Judy Tarro) |
| McGraw-Hill Companies is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks McGraw-Hill Companies for their comprehensive donation through their employee giving campaign, which will tackle research, support, education and awareness for scleroderma and related illnesses. Posted 05-28-09. |
| Anonymous Grantor is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks an anonymous foundation for their general operating grant, which will help us better tackle research, support, education and awareness for scleroderma and related illnesses. Posted 05-28-09. |
| Saundra Orth is Tackling Scleroderma Now! |
 The nonprofit International Scleroderma Network thanks Saundra Orth for her scleroderma book and awareness bracelet order! Posted 05-28-09. (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: Gene and Shelley Ensz, Keith Gledhill, Carrie Maddoux, Donald Christina, Janey Willis. Reposted 05/16/09. (Also see: Donate in Memory and Judy Tarro) |
| Charlene Redinger is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Charlene Redinger for her scleroderma book and awareness bracelet order! Posted 05-13-09. (Also see: Donate/Shop) |
| Debra Runge is Tackling Scleroderma Now! |
| The nonprofit International Scleroderma Network thanks Debra Runge for her scleroderma awareness bracelet order! Posted 05-13-09. (Also see: Donate/Shop) |
| ISN Trinidad and Tobago Scleroderma Support Group Launched |
| Scleroderma support group launched. Inspired by her own illness and its psychological effects on her personal life, Le Gendre has joined with several other Scleroderma sufferers to form the Scleroderma Care Foundation (SCF), where they gather to support, share, and network. Le Gendre explained that SCF will assist people who have struggled with the symptoms and psychological effects of the disease. She said there is need for nationwide public awareness about the disease. Trinidad and Tobago's Newsday. Posted 05-12-09. (Also see: ISN: Susan LeGendre) |
| Welcome to Amanda Thorpe: ISN Sclero Forums Support Specialist for Scleroderma Society U.K. |
| Amanda Thorpe: ISN Sclero Forums Support Specialist for Scleroderma Society U.K. I joined the Scleroderma Society U.K. and began posting on ISN as Ohboyoklahoma around 18 months ago. I've increased my involvement with the Scleroderma Society by becoming an advice line volunteer, trustee and webmaster of the website. I became webmaster because I wanted to create a U.K. site as vibrant, informative and user friendly as ISN's. Thankfully Shelley Ensz invited the Scleroderma Society U.K. to become an ISN affiliate so I'm now also the ISN Sclero Forums Support Specialist for the Scleroderma Society U.K., which will be launched shortly. Posted 05-12-09. |
| In Loving Memory of Judy Tarro |
| 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 Judy Tarro. She fell down a few days ago and did not recover from it. She gracefully led our online community through some extremely difficult and challenging times. She is founder of sdworld.org, and SD World email list. She has suffered from systemic scleroderma since she was 12 years old and has been on oxygen for many years now. We will send sympathy cards to her sister for donations in her memory from the nonprofit International Scleroderma Network, at http://www.sclero.org/, where Judy has also been an ISN Artist and Assistant News Guide for many years. Her story of living with scleroderma is featured in the ISN's book, Voices of Scleroderma Volume 3. Posted 05/07/09. (Also see: Donate in Memory and Judy Tarro) |
| 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 05-04-09. |
| 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 05-04-09 by Lisa Bulman, ISN Fundraiser. |
| New Personal Stories |
| Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success... |
| Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue... |
| Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye... |
| Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse... |
| Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen... |
| More New Stories: May-July 2010 |
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