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Scleroderma Foundation
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eLetter #732 | October 13, 2017  

Video:  The Fab Lab Tour

YouTube Fab Lab Tour

Research conducted in academic laboratories can lead to the development of potential therapies.  In this video recorded at the 2017 National Patient Education Conference, join Carol Feghali-Bostwick, Ph.D., on a virtual tour of a research laboratory and be introduced to the world of bench research.  Included are examples of work-in-progress and how research is advancing our understanding of scleroderma.

watch video

Medication Management for Caregivers

man happy older

The National Council on Patient Information and Education has tips online for caregivers of aging parents and elderly adults.  Follow this link to read ideas for helping parents and older adults make good use of their medicines, regardless of their age and health.  Among the items included is a checklist of questions to help figure out if the older adults in your life may need help managing their medicines.   

read more

How to Choose a Medicare Plan

medicare card

Medicare enrollment starts October 15, so now is the time to take charge of your choices.  You’ve only got until Dec. 7 to do the research, make decisions and file the forms.  To help you get started, AARP created a guide with the three main steps in shopping for the Medicare coverage that serves you best.

read more

Scleroderma Researcher Profile

Sergei Atamas MD

Sergei P. Atamas, M.D., Ph.D., of Baltimore Research and Education Foundation, is a Scleroderma Foundation funded researcher.  He received an “Established Investigator” grant early in 2017 for research entitled, “Exploring the Antifibrotic Potential of SIRT7.”  In Dr. Atamas’ words, “To accelerate development of new treatments for scleroderma lung disease, we investigate cells and molecules driving the disease process.”  SIRT7 is a molecule that likely regulates fibrosis but is lost with age.  The results of Dr. Atamas’ work will lay the groundwork for future development of innovative therapies for patients with scleroderma.

read about scleroderma research grant program

The Tri-State Connect Phone-In Support

2017 Tri-State Connect logo
Tuesday, October 17, 2017; 2:00 p.m.
1-224-501-3412; access code: 262-512-989
Guest Speaker:  Jessica Farrell, Pharm.D - Associate Professor of Pharmacy Practice, Associate Medical Officer, Steffens Scleroderma Center.
Topic: Role of the Pharmacist in Care and Treatment of Scleroderma.
You can also join via computer, smartphone or tablet. https://www.gotomeet.me/SFTriState

Chapter of the Year Award:
Greater Washington, D.C.

Carole Bernard Chapter of the YearThe 2017 Chapter of the Year Award recognizes the Greater Washington, D.C. Chapter (District of Columbia, Maryland, and Northern Virginia) for accomplishing great things under strong leadership of their Board President and Executive Director.  The chapter has rebuilt an infrastructure to support outstanding patient education programs.  They’ve launched a new support group in Northern Virginia.  Their fundraising has diversified and grown, and their outreach includes a focused social media strategy.  The chapter also broadened their access to medical experts to address their members’ needs more effectively.

Greater Washington, D.C. Chapter

Patients as Partners - Thank you!

SF iconThank you to everyone who responded to our upcoming Patients as Partners program in Dallas, Texas.  Recruitment for this program is currently underway.  Due to the overwhelming response, regretfully we will not be able to reply to everyone who’d like to participate.  However, your name will be added to our patient advocate list for future programs you may qualify for.  We appreciate your interest and participation in our Patients as Partners program and look forward to its continued success.

 

Photos:  2017 National Patient Education Conference

2017 conference photos

Check out photos from our 2017 conference in Arizona.  Photography courtesy Robb Cohen Photography, RobbsPhotos.com.

view photos

2018 National Patient Education Conference

phildelphia Patient Ed save the date 2018Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.

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Become a Member of the Scleroderma Foundation

2017 Voice Fall Cover

Become a foundation member and receive exclusive benefits such as the "Scleroderma Voice," a quarterly magazine that features news and stories from patients and scleroderma experts.  Join today for just $25! ($35 outside the U.S.) 

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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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