Several North American advocacy and research non-profit organizations will host a virtual flash mob June 29, on World Scleroderma Day, to raise awareness for the disease. The social media event will happen on the heals of more than 100 fundraising walks, tributes and other events held during June’s Scleroderma Awareness Month. Organizations heading up…
Bob Saget is a well-recognized comedian, TV host, and actor. But what one might not know is that he is also an advocate for scleroderma. How and why did he become involved with scleroderma? Talk-show host, singer, and actress Queen Latifah can be proud of her…
https://www.youtube.com/watch?v=FuWa-Hzz0_4 Eight years ago, Jessica Massengale was diagnosed with scleroderma, an autoimmune disease that causes scaring in her skin and some internal organs. She had been raised thinking she could do anything if she tried, and Jessica Massengale decided she would not suffer alone or in silence. Therefore, she created the project…
A healthy diet does not cure scleroderma, but nutrition is essential for patients’ overall health. It is important that patients who suffer from scleroderma discuss with their rheumatologists or nutritionists the best course of action. However, it is usually recommended that scleroderma patients follow a healthy and well-balanced diet,…
Macitentan, an oral endothelin receptor antagonist, was found in two Phase 3 clinical trials to be an ineffective treatment of digital ulcers in patients with systemic sclerosis. Trial results were evaluated by Dinesh Khanna, MD, and colleagues from the University of Michigan Scleroderma Program in Ann Arbor. Their findings, detailed in the article “…
Seeing someone wearing mittens on a warm spring day could make you wonder why — and it could be that person has scleroderma. A middle-age woman with no wrinkles can also be a tell-tale sign of scleroderma. The chances that people don’t know the symptoms or challenges of scleroderma are quite high…
Cytori Therapeutics recently announced that its FDA-approved Phase 3 STAR clinical trial evaluating ECCS-50 has enrolled and treated its 80th patient, reaching 100 percent of its target enrollment. Because of the strong interest and fast screening across the trial clinical sites, additional patients will be enrolled, so the final enrollment will…
The Scleroderma Foundation’s Annual National Patient Education Conference is right around the corner. Scheduled for July 29 – 31 in New Orleans, La., the event is dedicated to patients who struggle with the chronic and autoimmune disease, as well as caregivers and loved ones. At the conference, according to the …
Project Scleroderma: Beneath The Surface from Project Scleroderma on Vimeo. Project Scleroderma: Beneath the Surface has recently gained popularity, it was presented on the Oprah show and is highly anticipated by the scleroderma community. But what is this project and how was it started? Christy McCaffrey lost…
Bob Saget is a well-recognized comedian, TV host, and actor. But what one might not know is that he is also an advocate for scleroderma. Bob Saget is currently a member of the Scleroderma Research Foundation’s Board of Directors. While his sister died from the chronic and incurable disease…
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