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Raising Awareness for Rare Disease… One Cape at a Time

Tiny Superhero Capes-1-web
 

If you search the Internet for the origin of the “superhero cape,” as I just did, you might find yourself lost in a cyber-sea of Superman quotes, Twilight-tween tweets, and an oddly expansive selection of Zorro fan pages and Batman vs. Green Lantern public debates. I suppose now I am well equipped with unique and witty cocktail party conversation – particularly on Halloween – but more importantly, I am also certain that the superhero cape, regardless of its origin – has grown into a universally iconic symbol, summed up in single word: adventure.

For Robyn Rosenberger, founder of “Tiny Superheroes”, life, lately, has been nothing less. I had the great pleasure of speaking with this unlikely seamstress, who is quickly becoming an icon in her own right.

“I am not a seamstress by any stretch,” Robyn said when describing her epiphanic moment. “During the summer of 2012, I made three capes. One for my son, my nephew and my dog – just out of the blue, just for fun, and they loved it.”  That same summer she had also been following the blog, Blessed by Brenna – a weekly chronicle, authored by a young mother who happened to be an old schoolmate of Robyn’s husband – and who had also just given birth to a baby affected with Harlequin ichthyosis.

Then, one day while perusing the Blessed by Brenna blog, it happened — the “Aha” moment that would change Robyn’s life….

“Brenna needs a superhero cape because she is truly extraordinary!” Robyn thought as she rolled up her sleeves and began to assemble the fourth little cape she had ever sewn in her life.

However, when the story of Brenna’s cape broke in the blogosphere on both Robyn and Brenna’s blogs, it was as if the whole world was watching.  Unbeknownst to Robyn, when she had sewn that last little stitch on Brenna’s little cape, she had also begun the thread of something truly extraordinary herself – an organization that would empower children affected by rare disease all over the world.

“We decided to set up a page on our blog where we could take nominations for the next Tiny Superhero to receive a cape.” Her blog, Tiny Superheroes, now receives nearly 20 nominees a day, from a vast range of rare genetic disease communities, the world over.

“We seem to have a lot of interest from the ichthyosis community. It has been so wonderful getting to know these kids. And what’s been really amazing is that the children are all so different, so special in their own way.”

Tiny Superheroes has  been featured on Today.com, Fox News, Evening Magazine and the Huffington Post. But the most surprising fact?  The entire organization officially opened its doors just four months ago, in January of 2013.  “Now we’re even getting messages from people all over the world who’d like to volunteer and help us sew capes.  I’m trying to figure it all out as it comes – it’s really incredible how quickly it’s grown – but it seems to be all working so far.”

The second most surprising fact? In those mere four months, Robyn, and a small army of volunteers, have sewn nearly 500 capes – (although Robyn alone sewed 300 of them!)

Admittedly, this was not a lifelong dream of Robyn’s, as she had no experience, nor grandiose vision of one day helping to raise awareness for rare diseases. “It’s like the kids chose me, and it’s taken on a life of its own. I feel so privileged and I couldn’t be happier about where everything is going.”

By all accounts, the kids chose well.

However, Robyn now knows that she may not have been chosen to simply sew hundreds and hundreds of tiny capes.  “What I realized is that this work can help kids raise awareness for their own disease – which is really powerful. It’s much more than giving them a cape. It’s letting these kids know they can change the world. And I believe they can.”

And there you have it – no searching, nor super power, necessary.  Sometimes a hero really does just…come along.

For more on volunteering, donating, or nominating a Tiny Superhero go to www.Tinysuperheroes.com.

Learn more about how Robyn is empowering Tiny Superheroes on the video below.

Tiny Superheroes Video Screenshot-2013

 
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