February 2009 ISN Donation and Website News

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Mark Your Calendar for Pampered Chef Online Fundraiser!

Lisa Bulman's Pampered Chef Fundraiser! Mark your calendar for March 14-20, 2009, for our second Pampered Chef Online Fundraiser! Cooking at home is a great way to save money during tough economic times. Stock up on kitchen essentials during our next Pampered Chef fundraiser. Start making your wish list now! Reposted 02/26/09.

Nuevo Sclero Foro Español: Venezolana

Nuevo Sclero Foro Español: Venezolana. La Asociacion Venezolana de esclerodermia, te invita a participar en nuestro foro en español, donde tendrás ademas de informacion y apoyo, elementos necesarios para mejorar nuestra calidad de vida, la oportunidad de conocer y compartir con personas que como tú sufren de de los diferentes sintomas que proporciona ésta enfermedad y de acuerdo a sus experiencias pueden ayudarte a superar la incertidumbre y las dudas. Anímate a participar. Te esperamos con el cariño de siempre. Damos las gracias a la Red Internacional de esclerodermia por esta valiosa oportunidad. Posted 02-26-09. (Also see: Matilde Acosta and Asociación Venezolana de Enfermos de Esclerodermia)

In Loving Memory of Johnna K. Vogler

The nonprofit International Scleroderma Network thanks Linda Clinton for her donation of a car in loving memory of her daughter, Johnna K. Vogler.

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 02/23/09. (Also see: Donate Your Vehicle)

ISN Thanks Sandra Grace for her Voices of Scleroderma Book Order!

Thanks to Sandra Grace for her Voices of Scleroderma book 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 02/23/09.

(Español/Spanish) ASCLER FORO en Español!

Nuevo Grupo! Los miembros de la Asociación Colombiana de Esclerodermia -ASCLER- inauguramos recientemente una nueva comunidad virtual a través de ASCLER FORO. Bienvenidos a este nuevo ASCLER FORO en Español!. Esperamos desde este espacio proporcionar a sus participantes orientacion, information, esperanza y ayudo. Posted 02-20-09.

In Loving Memory of Tom Regensburger

Donate in Memory for scleroderma research, support, education and awareness

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, Christine Srock, Paula Stoll, Jill Swiatowicz, and Raymond Weil. Posted 02/16/09. (Also see: Donate in Memory)

ISN Thanks Lisa Peterson for her Voices of Scleroderma Book Order!

Thanks to Lisa Peterson for her Voices of Scleroderma book 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 02/10/09.

ISN Thanks Charlene Doherty for her Voices of Scleroderma Book Order!

Thanks to Charlene Doherty for her Voices of Scleroderma book order! You too can cuddle up with our scleroderma heroes as we regale our courageous battle with "the disease that turns people to stone." Cringe as our illness progresses; cry when we lose the battle. But most of all, 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 02/05/09.

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. (Also see: Donate in Memory)

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 ISN's ScleroShop, for only $14.99 each. Posted 01-27-09.

Join the ISN Rosetta@Home Team...use your computer's idle time to find disease cures!

Join ISN's Rosetta@home team! We need your help to determine the 3-dimensional shapes of proteins in research that may ultimately lead to finding cures for some major human diseases. By running the Rosetta program on your computer while you don't need it you will help us speed up and extend our research in ways we couldn't possibly attempt without your help. You will also be helping efforts at designing new proteins to fight diseases such as HIV, Malaria, Cancer, and Alzheimer's, etc. After signing up with Rosetta@Home, join the International Scleroderma Network (ISN) Team! Posted 01/24/09.

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. (Also see: Donate in Memory)

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. Reposted 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)

(Spanish/Español) 2009 ASCLER Revista: Esclerodermia con Calidad de Vida —Gratis!

En la Asociación Colombiana de Esclerodermia ASCLER celebramos el cinco aniversario de su fundación con el lanzamiento de su segundo Revista: 2009 Esclerodermia con Calidad de Vida (Uniflip, a Flash document). Esta es una publicación en español que ofrece orientación, información, esperanza y ayuda a todos los pacientes que padecen de la enfermedad, a sus familiares o relativos, a la comunidad médica y a toda persona interesada en el tema. Posted 01-06-09.

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: Donate and Earl Manns)

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

We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.