June 3, 2016

Do You Know Scleroderma?

By Guest Blogger Jillian H. Scola, communications manager, Scleroderma Foundation

If you’ve ever silently questioned someone wearing mittens on a warm spring day, the answer may be scleroderma. Or wondered why a woman, who otherwise appeared middle-aged, wore a face as wrinkle-free as her teenage daughter. The answer may be scleroderma.

But chances are you don’t know scleroderma. You don’t know the pain and challenges that the relatively rare autoimmune disorder wreaks on sufferers. That’s why a group of nonprofits is working together in June during Scleroderma Awareness Month culminating on World Scleroderma Day on June 29. They’re partnering so that more people know scleroderma and fewer patients will suffer in silence.

During the month of June, North America’s leading scleroderma advocacy and research organizations—Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada—will combine marketing efforts to boost awareness and spark compassion.

This year marks the agencies’ third consecutive annual campaign effort under the name “Hard word. Harder disease.” Together, they’ve grown the scleroderma network and increased online buzz and engagement.

Find A Local Walk Or Walk “Virtually”!

To commemorate World Scleroderma Day on June 29, 2016, the national office of the Scleroderma Foundation is hosting a virtual “Stepping Out to Cure Scleroderma” walk-a-thon! This is a great opportunity to connect with old friends, meet new ones online and virtually walk in memory or honor of a loved one affected by scleroderma.

The World Scleroderma Day Virtual Walk is connected to “Stepping Out to Cure Scleroderma,” the foundation’s premier fundraising event.

Unfortunately, “Stepping Out to Cure Scleroderma” walks do not occur in every city across America. But it is important to the foundation that everyone has an opportunity to participate in the walk in some way.

Before you begin planning your walk, check here and see if there is a local walk near you. Many of our 22 chapters are hosting walks in 2016 and also have their own virtual component in case you cannot attend.

We encourage you to participate locally whenever possible. Your local chapter could have just the opportunity you're looking for—such as helping others learn to live with scleroderma, helping with an event, and also making sure scleroderma remains a priority issue for elected officials.

If there is not a local walk near you, the National Scleroderma Virtual Walk is the way to go and was actually developed with you in mind! It is an easy and fun way to make a difference by raising funds online to support those living with scleroderma.

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