Save The Date To Make Some Noise About Scleroderma

Updated June 5, 2014.  We are a go for Thunderclap.  Now, we just need 100 participants to make it happen.  Can I count on you?  

Last year, we attempted to get #scleroderma to trend world wide on World Scleroderma Day. This year, let’s Thunderclap, and see if we can make even more noise than last year.

On June 17th, I have scheduled our “practice” Thunderclap.  I am proposing this practice Thunderclap, so we can be most effective on World Scleroderma Day, and  we can all see  you Thunderclap will work.

(Click to visit Thunderclap now, or click link at end of post.)

Like everyone who has scleroderma,  I have found trouble explaining scleroderma, simply because of it’s name. I am asking you to join me in a Thunderclap that will  provide links to  research, education and advocacy, non-profit foundations, and their own definitions of scleroderma.   This Thunderclap will not only help define scleroderma, it will direct people to legitimate organizations without bias.  We are in this together.   Together we are stronger and louder. 

What is a Thunderclap? 
Thunderclap is a crowd-speaking platform that  helps us be heard by saying something together.  I am asking you to join me, in a loud thunderclap to #EndScleroWhat.  June 17th at 8:05am PDT, is when the this first thunderclap will be scheduled.  This Thunderclap will include a definition of scleroderma in my words, and links to foundations and organizations pages to their definitions of scleroderma.  If you have a short definition of scleroderma you find helpful and wish to share it, please post it in the comments section  because that will help others.

This thunderclap will contain a patient definition of scleroderma, followed by a list of links to foundations with the following criteria:

1. Non-Profit

2.  Patient education and support

3.  Medical practitioner education

4.  Conduct or participate in research.

Our #EndScleroWhat Thunderclap Content is between the lines.  You may find Thunderclap post posted on May 31, 2014.  I cannot do this alone.  I need your help.  Please comment or send me a message.  Your feedback is important.  I want to know how I can improve this message in any way.  If you see typos, don;t be shy to tell me about them.  Thank you in advance.

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Medical practitioners, patients and those who love patients, often hear “Sclero-What?”, when trying to educate others.  Please help us to end “Sclero-What?”, by joining our Thunderclap to #EndScleroWhat at 8:05am  June 11.

Here is my brief definition:

Scleroderma is an autoimmune disease in the same family as Lupus and Rheumatoid Arthritis. Scleroderma is a progressive degenerative disease that  attacks connective tissue anywhere in the body, like  skin, internal organs and blood vessels.

For more information, please visit one or all of the links below for an even more detailed definition and list of symptoms.  

Non-Profit Scleroderma Resources that provide education, support and participate or conduct research.  

Scleroderma Foundation

Scleroderma Research Foundation

Scleroderma Care Foundation of Trinidad and Tobago

Johns Hopkins Scleroderma Center

FESCA

Please click the links and follow them on Facebook and/or Twitter.  Learn about scleroderma and share information to help us #EndScleroWhat.  We are in this together and acting together will make us louder.  Let’s make some noise about scleroderma and share this post!

Please note:  The Mighty Turtle is not affiliated with any organization but Bounce to a Cure.  All resources are provided void of bias and in no particular order.  

Click here for to view Thunderclap.

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