|
| Shelley
Ensz |
| Founder
and President of the International Scleroderma Network |
| I
wish I could say "Thank You" in 22 languages! |
 I'm
thrilled with the fabulous team spirit of our international
scleroderma community!
From our launch on January 21, 2002, the International
Scleroderma Network (ISN) has been blessed with
dozens of very talented people who lend their expertise
and open their hearts to those affected by scleroderma
and related illnesses, throughout the world.
The ISN is a fitting outgrowth of the Scleroderma
from A to Z website that I launched on January
7, 1998. From one humble page of scleroderma links,
it has blossomed to over 1,800 pages in 22 languages.
This has been made possible with dozens of amazing
worldwide volunteers.
The
ISN is dedicated to empowering people who are interested
in scleroderma, by providing medical and support information
in many languages. Our new book series, Voices
of Scleroderma, has been entirely created and produced
by our web site visitors and volunteers. Each volume
of Voices
of Scleroderma features over 100 patient and caregiver
stories, in five languages, representing 16 countries.
 I'm
Founder and President of the International
Scleroderma Network (ISN), the Scleroderma
from A to Z website, the Scleroderma
Webmaster's Association (SWA), EdinaWebDesign.com;
and co-editor of the Voices
of Scleroderma book series along with Judith
Thompson Devlin.
I live in Edina, Minnesota with
my wonderful husband, Gene, who is ISN Vice President. Gene has severe COPD and is on hold on the lung transplant list. Even though he is on 5 liters of oxygen around the clock, he is also one of the Greeters at the Yorktown Panera in Edina, Minnesota. |
|
| Shelley Ensz: Book Signings
at Panera Bread in Twin Cities |
Shelley
Ensz, Founder and President of the International
Scleroderma Network and Co-Editor of the Voices
of Scleroderma Book Series, will be doing public book signings for all 3 volumes
at:
Panera Bread in Minnesota from 10:30am-2:00pm:
May 9, 2006 (Tue) Knollwood Mall, St. Louis
Park
June 5, 2006 (Mon) Yorktown Mall, Edina
June 22, 2006 (Thu) 3808 Grand Way, St. Louis
Park
July 6, 2006 (Thu) 8251 Flying Cloud Dr, Eden
Prairie
Help raise awareness of scleroderma: bring your friends
and family! Books will be available for purchase. Reposted
04-25-06. |
|
| 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. |
| 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) |
| ISN Celebrates its 3rd
Anniversary! |
The International
Scleroderma Network celebrates it's 3rd anniversary
on Friday, January 21, 2005! The nonprofit ISN was launched
on 1-21-02, from the outgrowth of the Sclero.org website
which was founded on 1-7-98 by Shelley
Ensz.
The ISN operates the 1200+ page sclero.org website
in 20 languages, publishes the Voices
of Scleroderma book series, supports international peer-reviewed research in
collaboration with the Scleroderma Clinical Trials Consortium,
manages the 800+ member Sclero
MSN online support community, publishes the ISN
Insider newsletter for members, offers a tollfree hotline,
and works to unite the online scleroderma community through
leading the Scleroderma Webmaster's Association and it's
popular "Scleroderma
Sites to Surf!" program.
This is all made possible through the amazing international
grassroots collaboration of thousands of scleroderma patients,
caregivers, supporters, researchers,
site visitors, members, donors, volunteers, medical
advisors and board members who work together via the
internet to drive top quality information and support to
the farthest corners of the globe. Posted 01-20-05. (Also
see: ISN Donors) |
| Shelley Ensz: Book Signing
in Edina, Minnesota |
Shelley
Ensz, Founder and President of the International Scleroderma
Network and Co-Editor, signed Voices
of Scleroderma Volume 1 books at the Panera restaurant
in Yorktown Mall in Edina, Minnesota, on Monday, March
22, 2004, from 10am-2pm. "I was amazed by how many
restaurant visitors said they had relatives or friends
with scleroderma," she said.
ISN posters, brochures and business cards are now available
in PDF format for volunteers who would like to do similar
displays. Email shelley-ensz@sclero.org for
more information. |
| Contact Information |
| Please do not add me to unsolicited
mailings or databases. |
| EMAIL |
PHONE |
shelley-ensz@sclero.org
POSTAL MAIL
Shelley Ensz
International Scleroderma Network
7455 France Av S #266
Edina, MN 55435 |
Shelley Ensz
International Scleroderma Network
Toll Free: 1-800-564-7099
Direct: 1-952-831-3091
(English-speaking only)
If you get the answering machine, please leave a complete
message, including your country code if you are calling
from outside the U.S. |
|
| Related Links |
| Internet
as a Tool for Patient Support Groups to Provide Quality Information. AIM:
To compare the inquiries received by the Scleroderma Society
(SS), UK with those received by the International
Scleroderma Network (ISN). Worldwide collaboration of
medical professionals with patient organisations should lead
to a better understanding of clinical needs and better support.
Web presence and e-mail contacts should be used by patient
organisations in order to improve the quality and availability
of support. M. Dziadzio. SL0003 EULAR 2004. (Also see: ISN, Dr.
Magdalena Dziadzio, Dr.
Roy Smith, Prof.
Carol Black, and Shelley
Ensz) |
| Voices
of Scleroderma Book Series by Judith Thompson Devlin
and Shelley L. Ensz for the International Scleroderma Network. (Also
see: Judith Thompson
Devlin) |
| A
Pilot Database Analysis of Enquiries Submitted to the Medical
Committee of an International Scleroderma Website This
pilot database analysis identifies the main areas of information
that should be available to those affected by, or working
with, scleroderma. Magdalena Dziadzio FRI0078 EULAR 2003.
(Also see: ISN, Dr.
Magdalena Dziadzio, Dr.
Roy Smith, and Prof.
Carol Black) |
| Vaginal
Lubrication in Women with Scleroderma and Sjogren's Syndrome. Sexual
difficulties are often experienced by women with scleroderma,
particularly those with Sjogren's syndrome. S. Chris Saad,
Ph.D, J.E. Pietrzykowski, Sheila S. Lewis, B.S., Arlene M.
Stepien, M.S.N., R.N.C., Virginia Anne Latham, R.N., B.S.,
Shelley L. Ensz, Carol Wetherell, and Andrew E. Behrendt,
Ph.D. Expired link. Sexuality and Disability, Vol. 17, No. 2, ISSN 0146-1044,
Kluwer Academic, Summer 1999. (Also see: Sjogren's, and Sexuality
and Scleroderma) |
|
| Keep on Surfing! |
| Go to Foster,
Dr. C. Stephen |
|
