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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
A 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.
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.)
invitation will help us raise greater awareness of the issues facing
the scleroderma community. Please send your invitation TODAY!
The Scleroderma Foundation Advocacy Committee
Tasigna Pilot Study for Systemic Sclerosis Patients Shows Promising Results
In 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
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
REDDING, 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
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".
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!
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.