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|eLetter #694 | January 13, 2017
Research Survey Closing Soon
Don't Miss Your Chance to Participate!
If you are a patient with systemic scleroderma
(systemic sclerosis), you are being asked to participate in a research
the role of environmental factors in scleroderma. Environmental
factors are suspected to play a role in the development of scleroderma.
This is a research project being conducted by the Medical
University of South Carolina (MUSC).
You can only participate in this survey if you
are a patient with scleroderma. Your participation in this research study is
The study involves filling an online survey that
will take approximately 15 minutes. Your responses will be confidential. The
survey questions will be about the type of your disease, your first symptom, the
address(es) you live/lived at, and your occupation(s) when you developed your
first symptom or prior to developing your first symptom. We will also collect
identifying information such as your name, age, gender, race, date of birth, current
mailing address, and e-mail address. We will review public records on air and
soil quality for your address to determine if there may be common environmental
factors associated with scleroderma.
will keep your information confidential. To help protect your privacy, your
survey answers will be coded and will be
stored securely such that only the
members of the research team will have access to your identifying information.
If you have any questions about the research
study, please contact Dr. Carol Feghali-Bostwick or Dr. Celine Ward at (843) 972-8944
or at email@example.com. This research has
been reviewed and approved by the MUSC Institutional Review Board for research
involving human subjects.
We appreciate your participation in this survey. Please
complete the survey once only. Click on the link below to begin. Once you begin the survey, you will need to complete it as the
information will not be saved.
Take the survey >>
If you are
unable to open the survey using the link, please copy and paste the URL into
your browser: https://redcap.musc.edu/surveys/?s=KADL7CLTEC
ScleroMen Has Been Relaunched!
It's official - ScleroMen has been relaunched and the leaders encourage men with
scleroderma to join the group as soon as possible!
A closed group has been created on Facebook and will be hosted by the Scleroderma Foundation's Tri-State Chapter.
In order to become part of this group, you will need to send a message to ScleroMen@scleroderma.org asking to join.
new group leaders are Andrew Botieri from Massachusetts and Lee Korotzer
from Florida. These gentlemen are anxious to start the group and see
what types of support might be needed for men with
scleroderma - and we thank them for this commitment.
Feel free to send a request to join - your request should include your name and contact information which will help us to
vet the inquires so that only men with scleroderma will be able to participate.
you should have any questions or suggestions, contact Mary Beth
Bobik-Kadylak, Tri-State Director of Patient Education and Support at: firstname.lastname@example.org
The Value of Patient Advisory Boards
Principal Investigator, Tracy A. Battaglia, M.D., wrote a blog post recently about how researchers at Boston Medical Center have collaborated with patient advisory boards to highlight areas in need of more research.
"Patients first participated in focus groups that gave
feedback to the research team, highlighting routine barriers to care,
such as housing and employment problems, that require legal assistance.
As a result, the research team applied for funds to test patient
navigation with a legal advocacy approach."
Read more >>
Start the New Year with Scleroderma Gear
Visit our store at CafePress to find our full line of Scleroderma Foundation awareness items, including sweatshirts, t-shirts, hats, tote bags, water bottles and more! A portion of your proceeds benefit the Foundation's programs and services.
Remember to share with us on Facebook, Instagram or Twitter how you spread scleroderma awareness.
Welcome, Ross Blacker!
It is with great pleasure that we welcome
Ross Blacker as the Communications Manager at the Scleroderma
Foundation’s National Office. Ross began his tenure with the Foundation
just before the holidays. From day one, he has taken a deep dive into
our organization to learn about the many aspects
and challenges that face people living with scleroderma.
Ross joins our team with
20 years of experience, primarily within the non-profit realm, and he
will perform a myriad of tasks that include serving as editor of
The Scleroderma Voice, preparing and distributing the
weekly e-newsletter, assisting in maintaining the website and
communicating via the Foundation’s plethora of social media channels. In
addition, Ross will function as a resource for all chapters,
assisting them in spreading the organization’s message effectively and
A 1996 Rutgers graduate,
Ross has spent time in newsrooms as a reporter, on college campuses as a
Sports Information Director and for the past decade, leading
communications efforts for non-profits. He has held
positions with the Girl Scouts, MHPI, Inc., an organization
specializing in housing persons with income limitations and
developmental disabilities as well as with The Francis Ouimet
Scholarship Fund, an entity that makes the dreams of higher education a
brings a creative flair that draws from his nearly two-decade long
career. He has a knack for thinking outside of the box and producing
clear and concise messaging. Ross was
drawn to the Scleroderma Foundation given our mission-driven focus and
ability to directly help those affected by such a horrible disease.
He can be reached at (978) 463-5843 Ext. 243 or by email at
National Office Holiday Hours
Please note: The National Office will be closed Monday, Jan. 16, 2017, in observance of Martin Luther King, Jr. Day. We will reopen again for normal business hours (8:30 a.m. to 5 p.m. Eastern) on Tuesday, Jan. 17.
Have a nice holiday weekend!
Disclaimer: The Scleroderma Foundation in no way
endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is
provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.