Scleroderma Foundation eLetter
eLetter #452
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Greetings!  

Solo Cyclist Begins Journey Across U.S.
Raising Awareness of Scleroderma 
 

While most graduating college seniors are busy looking for their first job, 22-year-old Wade Dauberman has decided to do something a bit different. The Pennsylvania native took off last Sunday from Melbourne, Fla., the day after his college graduation, to start a 4,700-mile solo bike trip across the United States.

Wade's goal is to talk to people around the country and spread awareness of the disease, which took his father's life in 2010. He also wants to raise money to help the Scleroderma Foundation's research grant program.
Why Wade Helps Spread Scleroderma Awareness
Currently, Wade is riding through Georgia and has logged nearly 350 miles. On Sunday, May 27, his family and friends host a special fundraising event at Turbotville Community Hall before he leaves on the second leg of his journey.

Wade updates each night from the road through an online journal so be sure to read his stories and see some pictures from his trip! 

 

African-Americans Have More Severe Complications with Systemic Sclerosis  

Researchers from Georgetown University and the University of Pittsburgh said this week that three proteins are linked to worse outcomes in systemic sclerosis in African-American patients. The finding, which was published Thursday in "Arthritis & Rheumatism," suggests that physicians can use these disease markers to screen and treat scleroderma patients more proactively.

Virginia D. Steen, M.D., professor of medicine at Georgetown University Medical Center, and a member of the Scleroderma Foundation's National Medical Advisory Board, along with colleagues at the University of Pittsburgh, helped develop the database, which includes demographic, clinical, autoantibody, organ involvement and survival information for 203 African-American and nearly 3,000 Caucasian scleroderma patients seen at the University of Pittsburgh Medical Center between 1972 and 2007.

In addition to Steen, authors of the study include: Robyn T. Domsic, Mary Lucas, Noreen Fertig,  and Thomas A. Medsger, Jr., of the University of Pittsburgh School of Medicine. Dr. Medsger also is a member of Foundation's National Medical Advisory Board.

Read more about this news... 

Successful Phase III Trial Holds Promise For New PAH Treatment

May Also Prove Helpful for Ischemic Digital Ulcers Associated with Systemic Sclerosis (SSc) 

 

PRESS RELEASE  

ALLSCHWIL/BASEL, SWITZERLAND - Actelion announced that initial analysis indicates that the pivotal, long-term, event-driven study SERAPHIN with macitentan, a novel dual endothelin receptor antagonist, in 742 patients suffering from pulmonary arterial hypertension (PAH) and treated for up to three and a half years, has met its primary endpoint.

 

Macitentan, at both the 3 mg and 10 mg dose, decreased the risk of a morbidity/mortality event over the treatment period versus placebo. This risk was reduced by 45 percent in the 10 mg dose group (p<0.0001). At 3 mg, the observed risk reduction was 30 percent (p=0.0108). Treatment with macitentan in the SERAPHIN study was well tolerated.

  

Download the full press release as a PDF.  

Additional Workshops Announced
National Patient Education Conference 

Here are some other sample workshops for this year's conference:      

 

Linda Kaminski, MSEating Well With Scleroderma: This session will focus on the nutritional needs of people with scleroderma, with specific emphasis on preventing malnutrition and vitamin/mineral deficiencies, decreasing inflammation, managing gastrointestinal challenges, and fighting fatigue by way of healthy food and lifestyle choices. The speaker is a registered dietitian, who also has had scleroderma for 10 years. Presented by Linda Kaminski, M.S.  

 

Elaine FurstScleroderma and Sexuality: Can you live well with scleroderma and have a good sex life too? The answer is yes! Learn how to compensate for some impediments caused by scleroderma. Our speaker has written and presented on the topic of scleroderma and sexuality and is frank and engaging. Presented by Elaine Furst, R.N., B.S.N., M.A. 

 

Register for this year's conference in Dallas July 27-29. You also can view other workshop descriptions, learn about the hotel and more on our website. Remember, the early bird registration deadline is Friday, June 29. 

GI Involvement Teleseminar on May 24

Join the Scleroderma Foundation's Southern California Chapter for their next teleseminar at 11 a.m. (Pacific) Thursday, May 24. Dr. Daniel Furst will discuss "GI Involvement in Scleroderma." Dr. Furst is the Carl M. Pearson Professor of Medicine at University of California, Los Angeles, and Director, Rheumatology Clinical Research Center.

The teleseminar is open to everyone. Simply call (877) 216-1555 and enter the passcode 981555. For more information, contact Karen Gottesman at (877) 443-5755.   
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