Scleroderma Web Site News: January 2006

ISN Donation and Web Site News

Archives 2006: Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2008 - 2007 - 2006 - 2005 - 2004 - 2003 - 2002

January 2006

Alba León: ISN Translator for Italian and Spanish

Alba León: ISN Translator for Italian and Spanish. I study international relations in Mexico City. Posted 01-28-06.

In Loving Memory of Debbie Belian

The International Scleroderma Network thanks Kenneth Marchand for his comprehensive donation to tackle scleroderma research, support, education and awareness, in loving memory of Debbie Belian. Posted 01-26-06. (Also see: ISN: In Loving Memory Donors)

Voices of Scleroderma Volume 3: Just Released!

Voices of Scleroderma Volume 3 has just been released, with 100 more new patient and caregiver stories! Contributing professionals include Dr. Marco Matucci-Cerinic and Dr. Irene Miniati (on Systemic Scleroderma), Dr. Fernanda Falcini (on Juvenile Scleroderma), Dr. Tafazzul e-Haque Mahmud, Dr. Laszlo Czirjak (on Scleroderma-Like Disorders), Dr. James Seibold, Francisco Castellanos, and Carol Langenfeld. Posted 01-24-06.

Voices of Scleroderma Volume 1

The book, Voices of Scleroderma Volume 1 (First Edition) will no longer be available. The Second Edition will be available in a few weeks, replete with a lovely new book cover by ISN Artist, Ione Bridgman, whose paintings grace Volumes 2 and 3 as well. A few used copies of the first edition (pictured at left) may still be available for sale on Amazon for those who hanker for first editions. (At left is cover of the First Edition.) Posted 01-23-06.

ISN Celebrates its 4th Anniversary!

The nonprofit International Scleroderma Network celebrated its 4th anniversary on January 21, 2006. The nonprofit agency is an outgrowth of the ever-popular grassroots "Scleroderma from A to Z" website at www.sclero.org, which is now in it's 8th year of operation. Posted 01-23-06. (Also see: ISN Membership

SCOT Trial: Open Enrollment, 2005-2008

SCOT Clinical Trial, which stands for "Scleroderma Cyclophosphamide Or Transplantation", will compare two potential therapies: autologous stem cell transplantation versus high-dose monthly cyclophosphamide. Study dates 2005-2008. Reposted 01-11-06. (Also see: Scleroderma Clinical Trials: Current, Cyclophosphamide, Cytoxan and Stem Cell Transplantation)

NIH: Now Enrolling for Family/Twin Study

Families with Twins or Siblings where one has Systemic Rheumatic Disorders (Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lupus, Scleroderma, or Myositis) and one does not. Families may enroll at the NIH Clinical Center in Bethesda, Maryland, just 9 miles north of Washington, DC or at their local physician’s office. For information on the study, call the NIH patient recruiting office toll free at 1-800-411-1222 (For TTY: 1-866-411-1010). National Institutes of Health Clinical Center (NIH). Reposted 01-11-06. (Also see: Clinical Trial Open Enrollments, Scleroderma Research Registries and Causes of Scleroderma: Genetics)

In Loving Memory of Carolyn Cleland

The International Scleroderma Network thanks Jeanne Engelman for her comprehensive donation to tackle scleroderma research, support, education and awareness, in loving memory of Carolyn Cleland. Posted 01-09-06. (Also see: ISN: In Loving Memory)

Marilyn Simon is Tackling Scleroderma Now!

The International Scleroderma Network thanks Marilyn Simon for her comprehensive donation to tackle scleroderma research, support, education and awareness! Posted 01-09-06. (Also see: ISN: Comprehensive Donation)

In Loving Memory of Eleanor Palm

The International Scleroderma Network thanks Sara M. Cronin for her comprehensive donation to tackle scleroderma research, support, education and awareness, in loving memory of Eleanor Palm . Posted 01-09-06. (Also see: ISN: In Loving Memory)

Patsy Lundberg is Tackling Scleroderma Now!

The International Scleroderma Network thanks Patsy Lundberg for her comprehensive donation to tackle scleroderma research, support, education and awareness! Posted 01-09-06. (Also see: ISN: Comprehensive Donation)

In Loving Memory of Patricia Harper

The International Scleroderma Network thanks Martha Delargey for her comprehensive donation to tackle scleroderma research, support, education and awareness, in loving memory of Patricia Harper. Posted 01-09-06. (Also see: ISN: In Loving Memory)