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Scleroderma Foundation
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eLetter #731 | October 6, 2017  

Columbus Day Office Closing - Oct. 9

scleroderma foundation eletter logo.jpgIn observance of Columbus Day, the National Office of the Scleroderma Foundation will close on Monday, October 9.

www.sclerderma.org

Video - Blood, Sweat, and Tears

Patient Registries YouTubeWatch “How Patient Registries Help in Scleroderma,” recorded at the 2017 National Patient Education Conference and presented by Janet Pope, M.D., M.P.H., F.R.C.P.C., professor of Medicine, Schulich School of Medicine & Dentistry, University of Western Ontario.

 

Watch the Video

Western Pennsylvania Support Group

Pennsylvania MapIf you live in Western Pennsylvania and are interested in a Scleroderma Foundation sponsored support group, please complete this brief online survey.  Support groups provide a forum to share thoughts, concerns, and information; and to provide encouragement to one another. Meetings are free of charge to attend and support group leaders are trained by the foundation.

Complete the Survey

Think Before You Drink—
Sometimes, Alcohol and Medicines don't Mix

NCPIEThe National Council on Patient Information and Education (NCPIE) prepared a helpful discussion about consuming alcohol while on medication.  The NCPIE designates October

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Going Organic?

organic fruits and veggiesThe Arthritis Foundation blog, Living with Arthritis, posted a helpful discussion about considerations around food shopping for organic foods and health benefits.

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Chapter Volunteer of the Year Award

Mariann Boyanowski smMariann Boyanowski was honored with the Chapter Volunteer of the Year Award for her dedication and tireless work on behalf of the Ohio Chapter.  Mariann has been involved with the Ohio Chapter since its inception in 2001.  Over time, she served as chapter president, as a member of the nominating, fundraising, and the promotions committees.   She also plays a vital role in planning the Ohio Chapter’s biannual state conference.  In addition, 2017 was the 14th year that Mariann co-organized the Boardman Walk with her sister, Leni Schulz, which raises approximately $50,000 per year and has raised more than $400,000 since its inception.  Tina Fellows, Ohio Chapter Executive Director, shared that “the benefit that we have received from her knowledge, enthusiasm, and care for this great cause is immeasurable.”

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Scleroderma Researcher Profile

Rebecca Lee MD MS PhDEarlier this year, Rebecca Lee, M.D., M.S., Ph.D., of the Medical University of South Carolina, was awarded a New Investigator research grant by the Scleroderma Foundation.   According to Dr. Lee, “Patients are already receiving experimental injections of MSCs grown from their own tissues with the hope that this will be beneficial.  We think that this is a possible therapy, but that the MSCs need to be influenced to become fat and not dermis.  We have determined that two pre-existing drugs (called MVC and AMD3100) developed to treat AIDS can influence MSCs to become fat and not dermis.” The results of these studies will be extremely beneficial for scleroderma patients if this approach reveals a novel effective therapy for the disease.  [According to Wikipedia, Mesenchymal stem cells, or MSCs, are multipotent stromal cells that can differentiate into a variety of cell types, including: osteoblasts (bone cells), chondrocytes (cartilage cells), myocytes (muscle cells) and adipocytes (fat cells which give rise to marrow adipose tissue).]

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Save the Date –
2018 National Patient Education Conference

phildelphia Patient Ed save the date 2018

www.scleroderma.org/conference

Hope Raisers

hope raisers smWhether you are throwing a party, running a race or have a unique fundraising idea, you can become a “HOPE Raiser” and support thousands of people living with Scleroderma and help in the search for a cure!  Choose your event and set up your personal fundraising page. 

 

 
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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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