January 2009 ISN News

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, Sally Ross and Don DeBonce, Joan Ruhl, Jill Swiatowicz, and Raymond Weil. Posted 01/31/09.

In Loving Memory of Trudy Silveria

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 Trudy Silveria: The Early Ford V-8 Club Group #138. Posted 01/30/09.

Thanks to James Wallace for Voices of Scleroderma book order!

Thanks to James Wallace for purchasing Voices of Scleroderma Volume 1 from the nonprofit International Scleroderma Network. This book features over 100 patient, caregiver and survivor stories from this sclero.org website, from 16 countries, and in 5 languages!

Professional contributors include Dr. Joseph Korn, Gary Barg, Dr. Magdalena Dziadzio, Dr. Asim Iqbal Qureshi, and Dr. Thomas Lehman. Story topics include Caregivers and Survivors, Difficult Diagnosis, Diffuse Scleroderma, CREST, Limited Scleroderma, Linear/Localized, Morphea, Overlap and MCTD, Lupus, UCTD, Pulmonary Fibrosis, Fibromyalgia, Polymyositis, and Juvenile Scleroderma (just to name a few!)

Volume 1 offers 104 stories altogether; in English (91 stories), Greek (1), Italian (10), Polish (1) and Romanian (1) along with an English translation for each story. Story authors are from 16 countries: Australia, Canada, Greece, England, India, Italy, Iran, Jordan, New Zealand, Norway, Pakistan, Peru, Poland, Puerto Rico, Romania, and 32 states in the United States. Dr. Joseph Korn, who passed away shortly after this book was published, was Chief of the Rheumatology Section of the Boston University Arthritis Center. He was a highly renowned scleroderma expert with many research studies and professional publications to his credit. His lead-in article for Volume 1, entitled "Introduction to Scleroderma", clearly explains this complex disease.

The Voices of Scleroderma books are on sale now (for a limited time only) when ordered directly from the ISN, for only $14.99 each. Posted 01-27-09.

Welcome ISN Sclero Forums Support Specialist: Jeannie McClelland

ISN Sclero Forums Support Specialist: Jeannie (JJ Knitter) McClelland. Like many of us I had difficulty getting a diagnosis and once I did, even more difficulty finding out about the 'elephant in the room'. That's why volunteered to help as an ISN Assistant News Guide, and now as an ISN Sclero Forums Support Specialist. Posted 01/22/09.

In Loving Memory of Judy D'Aquino

The nonprofit International Scleroderma Network thanks Paul D'Aquino for his comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses, in loving memory of Judy D'Aquino. Posted 01/14/09.

Online Survey: Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases

(Expired) Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases. If you are a college student diagnosed with a(n) autoimmune related disease(s), then you may be eligible to participate in this study. It's an anonymous on-line questionnaire asking about your health related academic problems, needs, perceptions, and experiences of living with an autoimmune related disease while attending college. Must be 18 or older and currently enrolled full time or part time in a 4-year institute of higher education diagnosed with one or more autoimmune related diseases by your health care provider. Researcher Lauren Boyle, Indiana University. Posted 01/13/09.

Welcome Angela Abati: ISN Italian Guide

ISN welcomes Angela Abati: ISN Italian Guide. Angela graduated in Foreign Languages and Literatures from the University of Bologna. She will be translating Italian medical pages, answering Italian site inquiries, and overseeing the development of our Italian section and services. Posted 01-13-09. (Also see Sclero Italian Version)

(Italiano) Benvenuta Angela Abati: Guida Italiana per ISN

ISN da il benvenuto a Angela Abati: ISN Italian Guide. Angela si è laureata in Lingue e Letterature Straniere presso l'Università di Bologna. Si occuperà della traduzione in Italiano delle pagine mediche, risponderà a domande in Italiano riguardanti il sito e supervisionerà lo sviluppo della sezione italiana e i relativi servizi. Pubblicato 13-01-09. (Vedi anche: Sclero Versione Italiano)

Thanks to Debra Barrales: Silver Sponsor of Earl Manns Marathons!

The nonprofit International Scleroderma Network thanks Debra Barrales for her Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. Posted 01/02/09. (Also see Earl Manns)

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: