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Raising Scleroderma Awareness Now!


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7 replies to this topic

#1 LisaBulman

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Posted 02 May 2007 - 03:28 AM

The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Posted 05-01-07. (Also see: ISN Secure Shops)

Joseph Agro
Susan Campbell
Lori Carn
Julie Ford
Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
Samantha Rudesill
Christina Wilson


Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#2 nan

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Posted 02 May 2007 - 04:42 AM

Lisa,
I got one too and wear it every day! I keep waiting for someone to ask me what my bracelet says, but I haven't had anyone ask yet.
Have a good day!
Nan

#3 barefut

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Posted 03 May 2007 - 08:18 PM

In line at the grocery store I had another chance to tell someone about scleroderma - the checker. She said she knows another customer with diffuse but couldn't recall her name so she took mine, and my phone number to give to her next time she sees her.

I have been told about this woman by other people in my small town. I have even tried to flush her out with a personal ad. I think I may have seen her last year in the grocery store but I was too new to this disease and too afraid to aproach that person then. Hope I get to connect with her someday.

Anyway, only good can come from spreading awareness.

Take care all,

Barefut

#4 LisaBulman

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Posted 10 May 2007 - 01:36 AM

The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Reposted 05-09-07. (Also see: ISN Secure Shops)
Joseph Agro
Nan Blackwell
Kristina Blake
Stacie Brink
Susan Campbell
Lori Carn
Elena Farina
Julie Ford
Kristi Forman
Margaret Jackson Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
Samantha Rudesill
Suzanne Verschneider
Christina Wilson
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#5 LisaBulman

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Posted 22 May 2007 - 05:12 AM

The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as books, brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Reposted 05-18-07. (Also see: ISN Secure Shops)
Joseph Agro
Nan Blackwell
Kristina Blake
Stacie Brink
Susan Campbell
Lori Carn
Patty Crane
Elena Farina
Julie Ford
Kristi Forman
Margaret Jackson
Anna Johnson
Jacklyn LaPerriere
Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
Samantha Rudesill
Toni Spangle
Suzanne Verschneider
Christina Wilson
Michelle Zagorski
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#6 LisaBulman

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Posted 29 May 2007 - 01:22 AM

The nonprofit International Scleroderma Network thanks the following people who have purchased awareness items such as books, brochures and bracelets. Brochures are 50 cents each and include a Systemic Scleroderma Symptom Checklist. The teal silicone bracelets say "SCLERODERMA" and "SCLERO.ORG" and are $2.50 each. Reposted 05-26-07. (Also see: ISN Secure Shops)
Joseph Agro
Gizelle Bernier
Nan Blackwell
Kristina Blake
Stacie Brink
Susan Campbell
Lori Carn
Patty Crane
Elena Farina
Julie Ford
Kristi Forman
Margaret Jackson
Anna Johnson
Jacklyn LaPerriere
Thomas Lukcso
Mary Sue Madden
Pearl Martinez
Teresa McLaughlin
Melinda Peterson
Barbara Pierce
Samantha Rudesill
Toni Spangle
Suzanne Verschneider
Christina Wilson
Michelle Zagorski
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#7 relicmom1

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Posted 29 May 2007 - 02:08 AM

When I first found this site I bought two bracelets, one for me and one for my daughter. They have been on our wrists since the day I received them. I put the brochures on my coffee table with the magazines with the hope that our friends will read it. Everyone that we know are aware that I have a disease that has made me disabled, but they don't know to what extent this disease can go. I put them there with the hopes that the will read them. I just bought two more bracelets and two brochures. I am going to give them to my rheumatologist and hopefully she will share the info, at least the website, with others. I was hospitalized ( on the cardiac step down unit) for two days last April and every nurse asked me what my bracelet was for. I was surprised that most of the nurses did not know the first thing about scleroderma!!!!!! Let's keep trying to get the awareness out there and get the studies and support from the medical community!!!
Peace :)
Barbara aka relicmom1

#8 Shelley Ensz

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Posted 29 May 2007 - 09:05 AM

Thank you for helping raise awareness, Barbara -- we all really appreciate it! And it also shows the difference each one of us can make as individuals, by simply wearing our awareness bracelets, giving out brochures (or setting them out or making them available to our doctors), and just talking it up, in general.

That is definitely tackling scleroderma now...without any huge investment of either time or money.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.