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Scleroderma Foundation
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eLetter #626 | October 2, 2015  

Please Invite Your Members of Congress to the Scleroderma Foundation Event on Oct. 6 on Capitol Hill

AdvocacyA group of scleroderma advocates from across the country are going to Capitol Hill on Tuesday, October 6. As part of this Advocacy Day, the Foundation is hosting a “Congressional Briefing Lunch.” Your members of Congress will attend or send a staff person to attend IF A CONSTITUENT INVITES THEM TO DO SO. 

It’s fast and easy to send an invitation and encourage your elected officials (Senators and Members of the House of Representatives). Just click here and follow the simple directions to send an email invitation. (Download a flyer about the event.)

Your invitation will help us raise greater awareness of the issues facing the scleroderma community. Please send your invitation TODAY!

Sincerely,

The Scleroderma Foundation Advocacy Committee

Tasigna Pilot Study for Systemic Sclerosis Patients Shows Promising Results

books and stethoscope.jpgIn a pilot study of patients with diffuse cutaneous systemic sclerosis who were treated with Tasigna, the majority tolerated the treatment and some showed improvements in modified Rodnan Skin Scores, according to the results from the open-label, pilot study.

Ten patients with early systemic sclerosis (SSc) who met the 1980 American College of Rheumatology were recruited between November 2010 and December 2011 into an investigator-initiated, open-label, single-center pilot study.

Read the full article now from healio.com >>

Video: S.C.I.E.N.C.E. - So Cool It's Everything Nature Can't Explain

Video: Science So Cool

Scientific discoveries are the basis for the development of therapies. During this session from the 2015 National Patient Education Conference, Dr. Carol Feghali-Bostwick explains how research is done, provide examples of scientific discoveries that impact our lives, and will describe research of relevance to patients with scleroderma.

View the entire session now >>

October is Raynaud's Awareness Month

PRESS RELEASE

wristies.JPGREDDING, Conn., Sept. 24, 2015 /PRNewswire/ -- As fall gets underway, shorts and t-shirts are giving way to the season's latest fashions in outerwear, footwear and warmer clothing.

But for an estimated 5-10 percent of the U.S. population – 15 to 30 million people -- colder temperatures are a harbinger of pain. These people suffer from Raynaud's disease, a painful and sometimes debilitating disorder in which spasms in the blood vessels interrupt blood flow to the fingers, toes, nose and/or ears. Exposure to cold or emotional stress triggers the spasms, typically causing affected areas to turn white, then blue and red.

October is Raynaud's Awareness Month. According to the Raynaud's Association (http://www.raynauds.org), a whopping 80 percent of sufferers are not aware they have the disorder and do not seek treatment. There's no formal test to diagnose it and no FDA-approved drugs to specifically treat it.

View the full press release >>

Vote for Scleroderma Artist in EveryLife Contest

Lucy Wong is a longtime supporter of the Scleroderma Foundation and has lived with diffuse scleroderma for 27 years. She entered the EveryLife Art Contest through rareartist.org and the Every Life Foundation, and she would like your vote for her piece called "Flight of Hope".

Lucy Wong Artwork
Voting is on Facebook and continues through 11:59 p.m. on Dec. 22, 2015. Awards will be announced in early 2016. Just click the area below the photo with the checkmark to cast your vote (outlined in red above).

Please support Lucy and vote today!

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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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