Predicting the Progression of Raynaud Phenomenon to Scleroderma

Scleroderma Foundation eLetter

eLetter #401

Greetings!

New Research Offers Hope to Patients with Rare Lung Diseases and Systemic Sclerosis

Microscope Pulmonary fibrosis (PF) and pulmonary arterial hypertension (PAH) are incurable rare lung diseases and are the leading cause of mortality in patients with systemic sclerosis (SSc). However patients might have a reason to breathe easier since researchers from the University of Pittsburgh now provide a novel insight that explains how systemic sclerosis develops.

The research team was led by Carol Feghali-Bostwick, Ph.D., who is Vice Chair of the Scleroderma Foundation's National Board of Directors and head of the Research Committee.

Read more about this exciting new research from CheckOrphan.org.

One Month Left for Early Bird

Registration Discount

You still have one month to take advantage of the early bird registration rate for this year's National Patient Education Conference. The deadline for the early bird discount rate is Tuesday, June 21.

If you register by June 21, the cost is $185 for members and $235 for non-members. After June 21, the cost is $235 for members and $285 for non-members.

Be sure to take advantage of this deal and register today!

More workshops added to conference

Daniel E. Furst, M.D., will present "Scleroderma Tests & What They Mean." He also will be one of the experts on the Research Panel for Advances in Basic and Clinical Research.

Dr. Furst is the first Carl M. Pearson Professor of Medicine at the University of California, Los Angeles (UCLA), Medical Center, David Geffen School of Medicine, Department of Medicine, Division of Rheumatology. He has published more than 450 articles and 14 books, including more than 220 research articles and more than 230 reviews or chapters in addition to two editions of a book on scleroderma. Dr. Furst's areas of research interest include the clinical pharmacology of anti-rheumatic drugs and biologics, and the pathophysiology and treatment of systemic sclerosis.

Read about other speakers for the 2011 conference.

Predicting the Progression of Raynaud Phenomenon

Abnormal findings on nailfold capillary microscopy and the presence of scleroderma-specific autoantibodies in patients presenting with new-onset Raynaud Phenomenon without overt connective tissue disease are powerful independent predictors of progression to definite scleroderma.

Read the rest of the story about this Canadian study from Skin & Allergy News.

Actelion Athlete Profile: Scott Tsurutani

Scott Tsurutani-Img Scott Tsurutani spends his days managing the clinical trials to find effective treatments for pulmonary arterial hypertension (PAH). He spends his evenings, and the occasional lunch hour, pounding the pavement in his running shoes. Scott is one of 24 athletes from Actelion Pharmaceuticals U.S., Inc., who will swim, bike and run in honor of the Scleroderma Foundation at the June 5 Escape from Alcatraz triathlon, raising awareness of PAH and its impact on patients with scleroderma. (Click here for May 6 article.)

In Scott's role as a day-to-day operations manager of clinical trials, he has become very familiar with the toll diseases like PAH and scleroderma can take. Running is often thought of as a solitary sport but, at times, a great sense of camaraderie can develop among those struggling to keep moving forward, gasping for breath, and trying to push those final steps. It is during those times when having the support of his teammates and friends allow him to push through the difficult moments and reach his goals.

"Running is about more than staying healthy; it helps clear my head and gain perspective on life. It makes me realize how lucky I am to even be able to participate in an event like this," Scott said. "I am honored that I can contribute to this group of patients and their families as they bravely live every day with their disease."

Help cheer on Scott and his team - ActeliAthletes - as they continue their training for the Escape from Alcatraz triathlon by posting words of encouragement on our Twitter and Facebook pages.

Camps for Kids with Special Needs and Chronic Illnesses

Summer is nearly here. Now is the time to find a summer camp for your child. The National Dissemination Center for Children with Disabilities provides a resource page to help parents connect to camps and summer opportunities.