Scleroderma Foundation eLetter
eLetter #407
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Greetings!  

One Week to National Conference

See You in 'Frisco Bay 


We hope to see many of you in San Francisco next week for the National Patient Education Conference.  

 

Dr LallyStaff and volunteers from the National Office and the Scleroderma Foundation's Northern California Chapter have worked diligently over the past few months to assemble an excellent program that features the country's leading scleroderma experts such as Edward Lally, M.D. Dr. Lally will present "For Male Patients Only." He will talk about how scleroderma affects men differently than women, including erectile dysfunction and other issues, and the social aspects of being a man living with scleroderma.

 

You can view all of the 2011 conference workshop titles now on our website. You can also find information about the conference location, the Hilton San Francisco Union Square, other nearby accommodations, and links to airports in the area. 

Scleroderma Walks Bring Attention to Disease in June 

Stepping Out logoTwenty-nine "Stepping Out To Cure Scleroderma" walk-a-thons were held in June. Thousands of people from all across the country turned out for these events to spread the word about the disease during Scleroderma Awareness Month.  

 

Check out this story from one of these events held June 26 in the Chicagoland area.  

 

Have you taken part in one of the Scleroderma Foundation's walk-a-thons in 2011? Upload your photos to our Flickr Photo Pool at http://bit.ly/sclerowalks and we may use your picture in a future issue of Scleroderma Voice.

FDA Announces Orphan Drug Status for Accentia's Revimmune  

Accentia LogoAccentia Biopharmaceuticals, Inc. announced earlier this week that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug Designation to Revimmune™, the company's proprietary system-of-care based on high-dose administration of CytoxanŽ (cyclophosphamide), for the treatment of two autoimmune disease indications, systemic sclerosis (SSc) and autoimmune hemolytic anemia. Based on an exclusive world-wide license from Johns Hopkins University and a strategic agreement with Baxter Corporation, Accentia intends to conduct multiple clinical trials evaluating Revimmune therapy for the treatment of a range of autoimmune diseases including multiple sclerosis.

 

Read the full press release from Accentia Biopharmaceuticals

What is Localized Scleroderma?

ACR logoIn localized scleroderma, the tissues below the skin, including muscle and bone, can be affected. Besides the skin hardening, there also can be changes in skin color and texture, and the underlying tissues may fail to grow normally. Localized scleroderma can occur in several different forms, including linear scleroderma (where the lesion appears as a line or streak) and circumscribed morphea (where the lesion appears as a roundish lesion).

Learn more about localized scleroderma from the American College of Rheumatology.

Tips for Working Out in the Heat 

You have been loyal to your outdoor exercise program for months; walking, even when your muscles ached or biking, even when your arthritis acted up. Due to your dedication, your body is strong, your health is good and your endurance is better than ever, then summer approaches and the environmental thermostat begins to rise. Does that mean your beloved outdoor workout has to end when those warm months roll around?

 

Find out nine tips for staying active when the mercury rises from Today's Caregiver

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