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Scleroderma Foundation
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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 study on 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 voluntary.

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.

We 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 wardce@musc.edu. 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

Exciting Announcement
ScleroMen Has Been Relaunched!

ScleroMen LogoIt'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.

The 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.

If you should have any questions or suggestions, contact Mary Beth Bobik-Kadylak, Tri-State Director of Patient Education and Support at:  mbbkadylak@sclerodermatristate.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

sf cafepress longsleeve tee.jpgVisit 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!

Ross BlackerIt 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 efficiently.

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 reality for youth. 

Ross 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 rblacker@scleroderma.org

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!

 
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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.

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