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June is Scleroderma Awareness Month

  a·ware·ness əˈwernəs/ noun knowledge or perception of a situation or fact. “we need to raise public awareness of the issue” Synonyms: consciousness, recognition, realization concern about and well-informed interest in a particular situation or development. “a growing environmental awareness” – GOOGLE There were 27 diseases that had an awareness month in May. There are 13 in June […]

Scleroderma Project: Beneath The Surface, Should be Seen by Everyone.

  The title of my last post is, “I Hate The Documentary, Project Scleroderma: Beneath The Surface”.  I thought about changing the title, but I have decided to keep it, and follow up with this post.  I take you on a scenic route to my point, so feel free to jump to the paragraph that […]

Bounce to a Cure for Scleroderma

Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick.  Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa. This year, James will attempt to break another […]

Scleroderma and Me: An Update.

Posted May, 2013.  Update since test; negative for pulmonary hypertension; James of Bounce to a Cure, broka another world record while raising funds for scleroderma research. I left the video up to share with other patients, and let them know that sometimes it’s not pulmonary hypertension. We interrupt this wonderful life for scleroderma. Watch this […]

What’s The Point?

Will it really make a difference if we get scleroderma to trend June 3? Let’s start with more questions.  Because isn’t the journey what it’s all about?  No? Well how about this:  It’s what Yoda would do. Don’t worry, Young Jedi.  As always, there is an option to skip to the end.  What is most […]

Bob Saget: He Knows Scleroderma

So, maybe you’re skeptical about hearing what Bob Saget has to say about Scleroderma.  Maybe you’re thinking,  “What could an actor/comedian possibly have to contribute to the scleroderma patient community?” Well, for one, he lost his sister to the disease.  Also, he’s on the Board of Directors at the Scleroderma Research Foundation. Sure, scleroderma is […]