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Scleroderma Foundation
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eLetter #803 | March 1, 2019  

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Feghali-Bostwick Varga MedlinePlus


What's New on the Horizon for Scleroderma?

MedlinePlus Magazine, which is published by the National Institutes of Health (NIH), interviewed John Varga, M.D., of the Northwestern University Scleroderma Program and Carol Feghali-Bostwick, Ph.D., of Medical University of South Carolina regarding advancements in scleroderma research, including stem cell transplantation and anti-fibrosis drugs. 

Dr. Varga is a long-time member and former chair of the Scleroderma Foundation's Medical and Scientific Advisory Board.  Dr. Feghali-Bostwick is Vice Chair of the Scleroderma Foundation's Board of Directors and oversees the Foundation's peer-review grant program. 

read the full article

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

The Internet is a valuable tool for people living with systemic scleroderma as they seek resources and information on how to best manage the disease. This is especially so for those who don’t live in an area where they easy access to Foundation support groups and chapter education events. But, finding trusted sources on the Web can sometimes be a challenge.

The Scleroderma Foundation is pleased to be a partner on a NEW ONLINE RESOURCE called “Taking Charge of Systemic Sclerosis (TOSS); An Internet Self-Management Program.”  Learn more about it by following this link https://www.selfmanagescleroderma.com/

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Results of Controlled Trial Evaluating Internet-Based Self-Management in Systemic Sclerosis

Read the results of a study conducted to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in people who have systemic sclerosis (SSc).  The study recruited patients from the University of Michigan was the Medical University of South Carolina and was funded in part conducted by a large team led by Dinesh Khanna, M.D., M.Sc., and included input from Laura Dyas, Robert Riggs, and Kerri Connolly of the Scleroderma Foundation, and Janet. L. Pool, Ph.D., O.T.R./L., F.A.O.T.A.

The study was supported by a Patient-Centered Outcomes Research Institute Award (CER-1310-08323), and by by the NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases (K24-AR-063129).

read the full study

Stepping Out Logo 2018 Be Part of the Cure - Web


Stepping Out to Cure Scleroderma 2019

Upcoming Walk Dates and Locations

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends around those who have scleroderma.  The monies raised by individuals and teams are used to fulfill the Scleroderma Foundation's three-fold mission of support, education, and research.  

find more dates: scleroderma.org/steppingout

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Meet the Experts

Saturday, May 18, 2019, Dallas, Texas

American Thoracic Society Public Advisory Roundtable (PAR) 13th Annual FREE Patient/Family Forum focuses on "Taking Charge of Your Lung Health" with an outstanding panel, including:  Anne-Marie Russell, Ph.D., MSc.N., Daniel Croft, M.D., M.P.H., Narelle Cox, Ph.D., Kathleen Lindell, Ph.D., and Kelly Chin, M.D. The forum takes place at the Hyatt Regency Hotel, 300 Reunion Boulevard, Dallas, Texas, from 10 a.m. to 2 p.m.

The welcome message is delivered by Kerri Connolly, Chair of the ATS PAR and Scleroderma Foundation Director of Programs & Services.

Please RSVP by email to cwhite@thoracic.org no later than Wednesday, May 8, 2019.  For more information, please contact Mr. Courtney L. White, (212) 315-8640.

read more

Michigan Webinar 2019 March


Innovative Therapies for Scleroderma Patients

Webinar: Thursday, March 14, 7 p.m. - 8:30 p.m. ET

Richard Martin, M.D., founder of West Michigan Rheumatology will present innovative therapies for scleroderma patients. Dr. Martin is a Medical Advisory Board Member of the Scleroderma Foundation Michigan Chapter and has presented at patient education conferences. He and his practice see hundreds of scleroderma patients a year.

Please register to attend the webinar here
https://zoom.us/meeting/register/38ed8fbc55e242187510d14dfea9e911
Meeting ID:  269-679-319

2019 National Conference Chicago Design


Register Today for the National Patient Education Conference

July 19-20-21, Chicago, Illinois

Online registration for the 2019 National Patient Education Conference is live. The early bird discount is available until May 22, after which regular rates apply.  

Hotel information is shared upon conference registration.

If you are applying for a scholarship, please do not also register for the conference online.  

Register today!

Sign up for conference e-Alerts.

2019 National Conference Chicago SF logo


Conference Scholarship Applications

National Patient Education Conference
July 19-20-21, Chicago, Illinois

Scholarship applications are now being accepted to attend the 2019 National Patient Education Conference. The deadline to apply is March 20, 2019.

Scholarships are for first-time attendees who have scleroderma, including adults and children, and a parent/caregiver of minor children who have scleroderma.  Download an application today.

Visit scleroderma.org/conference for details.

Sign up for conference e-Alerts.

Dental Care Brochure Update 2019


Dental Care in Scleroderma

An updated pamphlet (January 2019) that discusses Dental Care in Scleroderma has been posted on the Scleroderma Foundation website.

People living with scleroderma face unique challenges while trying to maintain their oral health. They are more likely to be affected by dental conditions such as small mouth, dry mouth, jaw pain, gum disease, and dietary issues. Many people living with scleroderma have hand involvement, making it difficult to brush and floss. This pamphlet is an introduction to issues to discuss with your dentist regarding how scleroderma affects your dental care.

The Scleroderma Foundation thanks David M. Leader, D.M.D., M.P.H., of the Department of Comprehensive Care of Tufts University School of Dental Medicine, for his assistance in preparation of this brochure.

brochure download

Safete Kacaj Luljeta Dervisevic Sisters Reach for the Cure


Reach for the Cure

“The last time I heard my sister's voice was July 7, 2017. She was chosen to carry this disease. She was the strongest person on the planet.”

Luljeta Dervisevic, sister of
Safete Kacaj
 (1984-2018), Dx 1997

By making a generous gift to the Reach for the Cure campaign, you provide the essential resources for researchers to discover the cause, understand the mechanisms, and overcome the symptoms of scleroderma.  

Please give generously: www.scleroderma.org/reachforthecure

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Call for Nominations

The Scleroderma Foundation seeks to expand its National Board membership among those who are actively involved at the chapter level and have expertise in: fundraising/development, social media/technology, accounting/finance, human resources, nonprofit boards, and general business. Retired and non-practicing health care professionals will also be considered. The deadline is March 22, 2019.

To suggest a candidate for consideration, please complete the online form: www.scleroderma.org/boardcandidates

 
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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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