Swine Influenza (Flu) Update
Two Registries On Hand at National Conference
Linking Candidates with Disabilities to SSA Job
ACC: Pulmonary Hypertension Consensus Document Released
Those Inexplicable Instructions!
Are you a Woman of Worth?
The Many Shades of Lupus
Fearless Caregiver Conference
Scleroderma Message Board Is Moving to Inspire.com
Upcoming Events
2009 National Patient Education Conference Scholarships
Are Available
Photo of the Week
Stepping Out Walks
Commemorative Stamp for Scleroderma
2009 National Patient Education Conference
Scholarships Are Available.more... |
Photo of the Week
On Thursday, March 25th Executive Director Laura Dyas, Nancy Adams, Judy Nichols, Veronica Greason, Linda Miller and Effie Blackman all meet with Ryan Tarrant, the Director of External Affairs for Congressman Dave Camp, (R-4) Midland. The purpose of the meeting was to discuss the upcoming Scleroderma Research and Awareness Bill that will be introduced into Congress by Congresswomen Lois Capps in the near future.
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Stepping Out to Cure Scleroderma Walks Gearing Up
Find a walk near you! |
Commemorative Stamp for Scleroderma
The Scleroderma Foundation
is pursuing a commemorative stamp for scleroderma.
We
need your help! |
2009 Communications Sponsor |
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The
human swine flu outbreak continues to grow in the United States
and internationally. Today, CDC reports additional cases of
confirmed swine influenza and a number of hospitalizations
of swine flu patients. Internationally, the situation is more
serious too, with additional countries reporting confirmed
cases of swine flu. |
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Heidi Jacobe,
M.D. |
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Marilyn Perry |
Two
Registries Looking for Patients at National Conference
Morphea
Registry and DNA Repository
Dr. Heidi Jacobe and her staff will be enrolling patients.
They welcome any patient with morphea 3 years old or older
to enroll in this study. The purpose of this study is to create
a national registry of people with morphea in order to answer
questions associated with the disease: its association to
other diseases, and the genetics behind the disease.
Scleroderma
Family Registry and DNA Repository
On behalf of Maureen Mayes M.D., MPH, Marilyn Perry and her
staff invite you to register and become members of the Scleroderma
Family Registry & DNA Repository. This NIH/NIAMS (National
Institutes of Health/National Institute for Arthritis, Musculoskeletal
and Skin Diseases) financed national resource has to date
enrolled over 1,300 scleroderma patients. |
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 The
Social Security Administration has recently received funding
to hire a significant number of employees throughout the country. This
hiring initiative offers a unique opportunity for individuals
with disabilities who may want to get a job with SSA. These
jobs will be at various skill levels including a number of
entry-level positions.
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 Although
recent advances have led to increased recognition of new therapies
for pulmonary hypertension, this complex and rare disorder
has been inadequately explored, according to an Expert Consensus
Document published online March 30 in the "Journal of
the American College of Cardiology" to coincide with
the American College of Cardiology's 58th Annual Scientific
Sessions held March 29–31 in Orlando, Fla.
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By
Barry S. Tepperman, M.D., M.B.A., F.A.C.R.
It
happens to every caregiver. You're at the doctor's with your
loved one. You and your loved one are both feeling well, and
your loved one is looking forward to a vacation away-with
some strenuous physical activity. Just to check, you tell
the doctor your plans: you're off, together, to the Great
Smoky Mountains for some hiking. A concerned frown comes over
the doctor's face, and your doctor says, "I really don't think
you should do that..." The voice trails off, and—if
there's an explanation offered—you don't quite understand
it, or it's lost in the immediate impact of the doctor's statement. |
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 If
you have lupus, you probably have many questions. Lupus isn’t
a simple disease with an easy answer. You can’t take
a pill and make it go away. The people you live with and work
with may have trouble understanding that you’re sick.
Lupus doesn’t have a clear set of signs that people
can see. You may know that something’s wrong, even though
it may take a while to be diagnosed.
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Stressed
about caregiving? Join us at a Fearless Caregiver Conference...coming
to a town near YOU!
Enjoy
an entire day with caregiving experts.
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Ft. Lauderdale, Florida
Thursday June 18,
2009
8:30 a.m.–2:30 p.m.
Signature Grand
6900 State Road 84
Davie, FL 33317
REGISTER |
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Chicago, IL
Wednesday May 27, 2009
8:30 a.m.–2:30 p.m.
Holiday Inn Chicago
North Shore
Skokie Banquet and Conference Center
5300 W. Touhy Avenue
Skokie, IL 60077
REGISTER
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Scleroderma
Message Board Is Moving to Inspire.com
 In
an effort to help improve community communications, we will
begin using www.inspire.com on May 4, 2009,
as our new message board. Inspire.com offers additional features
and is more user friendly compared to the format of this previous
message board. To join, please go to www.inspire.com
and create a login and password. We will keep our old message
board up through the end of May in order to allow people to
copy and paste their posts to Inspire's message board. On
May 4, there will be an announcement on our home page with
the Web address.
This
board is public by default. You can choose to make posts available
to Inspire members only. Just login and click on My Settings
to make the changes.
Thank you for your understanding and assistance! |
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Nominate
a Woman Of Worth and L'Oréal Paris will make a $5,000
donation to her most cherished charitable cause. LOreal will
make an additional $5,000 donation in the
name of each winner to support The Ovarian Cancer Research
Fund (OCRF), L'Oréal Paris primary philanthropy. To
date, L'Oréal has raised over $18 million on behalf
of OCRF to honor their commitment to women. |
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