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2003 ISN News

December 2003

Dr. Shinichi Sato: ISN Medical Advisory Board
Dr Shinichi Sato of Japan is a new member of the ISN Medical Advisory Board. New page 12-19-03.
New ISN Web Page: Eosinophilic Fasciitis
Eosinophilic Fasciitis The debate is ongoing as to whether or not eosinophilic fasciitis is a form of scleroderma. New page 12-19-03. ISN.
New ISN Web Page: Systemic Lupus Erythematosus (SLE)
Systemic Lupus Erythematosus (SLE) is an autoimmune disease that can cause a multitude of symptoms. Lupus can occur in overlap with scleroderma and other autoimmune diseases. Scleroderma is also frequently misdiagnosed as lupus in its initial stages. New page 12-11-03. ISN.
New ISN Mousepad
ISN MousepadISN 2004 Mousepad for $12.99 Our durable cloth top mousepad will keep your mouse rolling in sclero style! Rubber backing keeps the mousepad from sliding. Machine washable. 9.25" x 7.75"and features the artwork of ISN Artists, Ione Bridgman, Sherrill Knaggs, and Judy Tarro. New item 12-10-03.
New ISN Web Page: Vasculitis
Vasculitis is an inflammation of blood vessels, which can affect many different parts of the body. Sometimes it occurs along with illnesses like lupus or scleroderma. New page 12-10-03. ISN.
New ISN Web Page: Dermatomyositis and Polymyositis
Dermatomyositis and Polymyositis. Polymyositis is an inflammatory condition of the muscles ; dermatomyositis is an inflammatory condition of the skin and muscles, which causes a distinctive rash. New page 12-9-03. ISN.
New ISN Web Page: Myasthenia Gravis (MG)
Myasthenia gravis is a neuromuscular autoimmune disease that is sometimes associated with scleroderma or other autoimmune diseases. New page 12-6-03. ISN.
ISN Artist's Featured in 2004 Calendar!

ISN 2004 Floral Calendar ISN Artists Ione Bridgman, Sherrill Knaggs and Judy Tarro have worked with project leader Judith Thompson to create a lovely 2004 Floral Calendar which is now for sale online through ISN Cafe' shop. The calendar features their photos and paintings of flowers which decorate the hundreds of personal stories on this website.

You don't have to be an ISN member to order items from our ISN shop. But please remember the International Scleroderma Network this holiday season! Our nonprofit agency brings you the www.sclero.org website, the Voices of Scleroderma book series, and we support scleroderma research, too!

We invite you to join our dynamic team as a member, donor, and/or volunteer. Paid members receive our very special ISN Insider Newsletter! New item 12-5-03.

New ISN Web Page: Antiphospholipid Syndrome (APS)
Antiphospholipid Syndrome (APS) is also known as Hughes Syndrome. Symptoms include deep vein thrombosis (DVT), chronic leg ulcers, recurrent miscarriages, headache, heart attacks, renal vein and artery thrombosis, pulmonary embolism, and pulmonary hypertension. It is identified by the presence of anticardiolipin antibodies, in a blood test. The same antibodies have been associated with generalized morphea scleroderma. New page 12-4-03. ISN.

ISN News: November 2003

Remember the ISN this Holiday Season

ISN OrnamentRemember the International Scleroderma Network this holiday season! Our nonprofit agency brings you the www.sclero.org website, the Voices of Scleroderma book series, and we support scleroderma research, too.

You can join our dynamic team as a member, donor, and/or volunteer. Paid members receive our ISN Insider Newsletter! (At left, holiday ornament from ISN Cafe Shops.) New promo 11-25-03.

ISN Portuguese Translator: Jaqueline Jacques
(Portuguese) Jaqueline Jaques: ISN Portuguese Translator Meu nome é Jaqueline Jacques e faço parte da equipe de tradutores do ISN. New page 11-24-03.
New Afrikaans Email Support
Afrikaans Scleroderma Email Support Person and English-speaking South Africans is Marthie Duminey. You may email her at MDuminey@omnia.co.za. New listing 11-24-03.
Jaqueline Jaques: New ISN Volunteer
Jaqueline Jacques joins us as the newest member of our ISN Portuguese Translator team, which was started by Ana Celia Castro. Jaqueline holds a certificate in Translation and Interpretation from the University of California, Berkeley and has a B.A. in Liberal Studies with emphasis in International Relations from the San Francisco State University. New page 11-19-03.
ISN Participates in Stockholm Challenge Award 2003/2004
Stockholm Challenge ParticipantThe Stockholm Challenge Award 2003/2004. ISN's sclero.org website is one of 900 IT projects that have been nominated, from 107 countries around the world. Finalists will be announced in January 2004. 11-6-03.
New ISN Representative
Kim Curry is the newest ISN Support Specialist. She owns a desktop publishing business and has been a member of Sclero MSN (now Sclero Forums) since January of 2003. New page 11-5-03.

ISN News: October 2003

In Memory of Sylvia Finegan
Sylvia Finegan, very well known and loved in our online community as the co-moderator of the ever-popular SD World email list, passed away on 10-30-03. She will be very deeply missed by all who knew her. 10-30-03.
New ISN Photo Repository Pages
Raynaud'sRaynaud's New page in ISN Photo Repository, submitted by Judith Thompson. 10-23-03.
Saba Sadiq: New ISN Position
Saba Sadiq has expanded her role as an ISN Story Editor to also be ISN Assistant Webmaster. She has advanced training in Macromedia Dreamweaver and is beginning training in our site procedures now. New position 10-14-03.
Help Raise Awareness of Scleroderma!

ISN Cafe Shops offers t-shirts, mugs, clocks, teddy bears, tote bags and other items promoting scleroderma awareness. Treat yourself or a loved one to a sclero-gift today and show your support for the nonprofit International Scleroderma Network (ISN).

"Webstergirl, our parrot, likes nothing better than sitting on my shoulder while I am reading Sclero Forums and wearing my ISN t-shirt ! And my favorite mug is my ISN mug, of course.," says ISN President, Shelley Ensz. 10-1-03

ISN News: September 2003

Help Raise Awareness of Scleroderma!

ISN Teddy BearISN Cafe Shops offers t-shirts, mugs, clocks, teddy bears, tote bags and other items promoting scleroderma awareness. Treat yourself or a loved one to a sclero-gift today!

"There's nothing finer than browsing the website and reading Sclero Forums messages while wearing my ISN t-shirt ! And my favorite mug is my ISN mug, of course.," says ISN Vice President, Gene Ensz. 9-24-03.

Judy Tarro: ISN News Guide Assistant
Judy Tarro, ISN Artist, has also accepted the position of ISN News Guide Assistant. New position 9-22-03.
New Page: Causes of Scleroderma: Molecular Defect
Causes of Scleroderma: Molecular Defect Some researchers suspect that a molecular defect in TGFbeta/SMAD may play a role in the development of scleroderma fibrosis. New page 9-15-03.
New Page: Causes of Scleroderma: Interleukins
Causes of Scleroderma: Interleukins Interleukin-10 gene is associated with scleroderma; interleukin-1 may upregulate scleroderma fibroblasts; interleukin-13 is associated with localized scleroderma. New page 9-15-03.
New Page: Causes of Scleroderma: Autoimmunity
Causes of Scleroderma: Autoimmunity Scleroderma appears to be an autoimmune disease, in which the immune system attacks the body itself, causing an overproduction of collagen. New page 9-15-03.
New Page: Causes of Scleroderma: Cluster Studies
Causes of Scleroderma: Cluster Studies Cluster studies can help pinpoint some of the causes of scleroderma. New page 9-12-03.
New Page: Causes of Scleroderma: Environmental (Main Page)
Causes of Scleroderma: Environmental (Main Page) Topics covered include exposure to cadmium, mercury (dental amalgam), solvents (such as paint thinners), radiation, and silica as either known or suspected causes of autoimmune diseases or scleroderma. New page 9-12-03.
New Page: Causes of Scleroderma: Artificial Joints and Implants
Causes of Scleroderma: Artificial Joints and Silicone Breast Implants Are some cases of connective tissue disease, such as scleroderma, related to artificial joints or silicone breast implants? Contradictory findings continue to plague research into this area. New page 9-12-03.
New Page: Causes of Scleroderma: Infections
Causes of Scleroderma: Infections Researchers have long suspected an infection component may be involved as the trigger of some cases of scleroderma and there is an ongoing study about persistent infection as a possible cause of scleroderma. New page 9-12-03.
New Page: Causes of Scleroderma: Mercury (Dental Amalgam)
Causes of Scleroderma: Mercury (Dental Amalgam) Here is some research related to mercury exposure as a possible risk factor for autoimmune disease, such as scleroderma. New page 9-12-03.
New Page: Causes of Scleroderma: Drugs and Medications
Causes of Scleroderma: Drugs and Medications. Some medications and street drugs are known or thought to induce scleroderma or Raynaud's. New page 9-12-03.
Judy Tarro: ISN Artist
ISN Artist: Judy Tarro is the newest volunteer for the nonprofit International Scleroderma Network (ISN). Judy joins the dynamic ISN Artists team that includes Ione Bridgman and Sherrill Knaggs. New page 9-11-03.
New Page: Causes of Scleroderma: Genetics
Causes of Scleroderma: Genetics includes information on DNA, Familial CRST with Sicca Syndrome, Familial Progressive Systemic Sclerosis (FPSS), studies of twins, Choctaw genetic study, and human genome project. New page 9-10-03.

ISN News: August 2003

Jill Carpenter: ISN Volunteer Services Clerical Assistant
Jill Carpenter is our newest ISN Volunteer Services Clerical Assistant. New page 8-20-03.

ISN News: July 2003

New ISN Web Page: Simplified Chinese Version
硬皮病分型 Types of Scleroderma: Overview. New translated page by ISN Simplified Chinese Translator, Jie Jackson. 7-30-03.
New ISN Web Page: Thyroid
Thyroid Disease It is common for people with scleroderma to also have other health problems, and thyroid disease can often be associated with it. The two main types of thyroid disease fall into hyperthyroidism (Grave's disease), and hypothyroidism (Hashimoto's thyroiditis). New page by ISN Thyroid Guide, Sherrill Knaggs 7-7-03.

ISN News: June 2003

ISN Book Signing by Judith Thompson
Judith ThompsonISN Archive Committee Chair Judith Thompson signed over 100 copies of Voices of Scleroderma Volume 1 and shipped them out to story contributors earlier this week, with the help of Joanne G . This long-awaited book features over 100 stories from 16 countries and in 5 languages from the www.sclero.org website, as well as articles by scleroderma and caregiving experts. 6-18-03.
New ISN Representative: Lizzy Cotton
ISN Support Specialist: Lizzy Cotton is the newest member of the support team for our Sclero MSN Community (now Sclero Forums), a message board and email list that provides scleroderma news and support (in English). New page. 6-18-03.
ISN Representative: Dina Davidoff
ISN Hebrew Translator: Dina Davidoff has been the Hebrew translator for this site for four years. She is also the founder of a scleroderma support group in Israel. New page. 6-10-03.
New ISN Service: ISNmart
CafeShops Hosts ISN Imprint Store offering clothing and promotional items for the ISN and scleroderma awareness. Our initial line includes the ISN logo on tee shirts (all sizes up to 3-X-Large), wall clock, teddy bear, and apron. New service by ISNmart Guide, Judith Thompson. 6-1-03.
New ISN Web Page: Dialysis
Kidney (Renal) Dialysis When the kidneys fail, dialysis of some form must be instituted to take over the work of the failed kidneys. There are two types of kidney dialysis: hemodialysis and peritoneal. New page by ISN Dialysis Guide, Sherrill Knaggs. 6-1-03.

ISN News: May 2003

New ISN Web Page: Dialysis
Kidney (Renal) Dialysis When the kidneys fail, dialysis of some form must be instituted to take over the work of the failed kidneys. There are two types of kidney dialysis: hemodialysis and peritoneal. New page by ISN Dialysis Guide, Sherrill Knaggs. 6-1-03.
New ISN Web Page: Gangrene
Gangrene in Fingertips Gangrene and Amputations Severe cases of scleroderma and Raynaud's may cause a total lack of blood supply to the extremities. When this happens, necrosis (death of tissue) and gangrene may set in, sometimes making it necessary to have the affected part(s) amputated. New page. 5-15-03.
New ISN Web Pages: Photo Repository
SclerodactylyISN Photo Repository: Sclerodactyly The most classic symptom of systemic sclerosis (scleroderma) is sclerodactyly. Initial symptoms include swollen hands, which sometimes progress to this tapering and claw-like deformity. Not everyone with scleroderma develops this degree of skin hardening. However, it is this symptom that has earned scleroderma the nickname of 'the disease that turns people to stone'. New pages. ISN Photo Repository 5-7-03.

ISN News: April 2003.

New ISN Representative
Patty S. Sralla: ISN Newsletter Coordinator New page. 4-20-03.
ISN Representative Promotion
Sherrill Knaggs: ISN Senior Support Specialist ISN volunteer Sherrill Knaggs has accepted a promotion to Senior Support Specialist for Sclero MSN Message Board (now Sclero Forums). Updated page. 4-10-03.
New ISN Position Description
ISN Position Description: Support Specialist Approve new members and messages and moderate the Sclero MSN message board (now Sclero Forums). New page. 4-5-03.
Award Nomination
The International Scleroderma Network's sclero.org website has been nominated as a contender for the prestigious Stockholm Challenge Award 2003/2004. The Stockholm Challenge rewards projects that through inspirational approaches benefit people, society and the environment in their local context. An international jury, consisting of senior experts from all corners of the globe will start evaluating all projects in the beginning of November, 2003. The finalists will be announced on February 2, 2004 and the winners on May 13, 2004 in the City Hall of Stockholm, Sweden. Stockholm Challenge 4-3-03.
New ISN Topic
Skin Involvement: Collagen New topic section about collagen and silicone injections by Sherrill Knaggs, ISN News Guide. New topic. 4-1-03.

ISN News: March 2003

New ISN Representative Page
Heidi Nolan: ISN Support Specialist for Sclero Forums Heidi is a university professor with a degree in clinical psychology. New page. 3-19-03.
New ISN Representative Page
Christine Patane, ISN Volunteer Services Assistant. Christine has an MBA and extensive business experience. New page. 3-18-03.
New ISN Page
ISN Position Description: Volunteer Services Assistant (Clerical) This virtual volunteer position will provide support to the ISN Chair of Volunteer Services. New page. 3-17-03.
New ISN Representative Page
(Spanish Version) Edwin Lamoli-Torres, ISN Spanish Translator. Soy profesor retirado de la Universidad de Puerto Rico en Mayaguez, de donde me retire en el 1992 luego de haber trabajado alli por espacio de 23 años. New page. 3-16-03.
New ISN Representative
Barbara (Barbs) Anne Lowe, ISN Support Specialist for Sclero Forums Barbs lives in Lancashire, England. New page. 3-16-03.

ISN News: February 2003

New ISN Representative
Edwin Lamoli-Torres: ISN Spanish Translator Edwin is a resident of Cabo Rojo, Puerto Rico. He is a retired professor from the University of Puerto Rico at Mayaguez. New page. 2-26-03.
New ISN Volunteer Opportunity
ISN Fundraising Event Organizer We are accepting applications for this exciting virtual volunteer position to create and manage a fundraising event for the nonprofit International Scleroderma Network. New page. 2-25-03.
New ISN Volunteer Opportunity
ISN Publications Manager We are accepting applications for this exciting virtual volunteer position which manages the preparation of all ISN publications. New page. 2-25-03.
New ISN Representative
Jeanne M. Henry: ISN Grant Writer. The ISN welcomes Jeanne Henry as Grant Writer. New page. 2-24-03.
New Web Page:
ASTIS Study: High Dose Immunoablation and Hematopoietic Stem cell Transplantation versus Monthly Intravenous Pulse Therapy Cyclophosphomide in Severe Systemic Sclerosis. Currently enrolling. 2-20-03.
New Member of Scleroderma Webmaster's Association:
The Scleroderma Press publishes Scleroderma: A New Role For Patients & Families, and Personal Medical Organizer (PMO), by author and webmaster, Michael Brown. 2-19-03.

ISN News: January 2003

Upcoming pages that are in ISN website production include:
§ 1 new Simplified Chinese medical page by ISN Translator Jie Jackson
§ 2 new Portuguese medical pages by ISN Translator Bernardo Dania
§ 20 new Spanish medical pages by ISN Translator Gabriela Hebin
Go to Scleroderma Website News for 2004
About the ISN

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