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Make A Little Movement!

This past week, a group of men and women in a Facebook Group called Neuronauts – led by a dynamo named Lori Raines – determined to make a dent in the public consciousness via CNN iReports, the hope to...

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Bon Anniversaire!

A year ago today I pressed the publish button on my newly created, blissfully pink WordPress site, a simple motion that shook my very core with far greater velocity than Dystonia. I’d embraced a new...

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Team Dystonia: Get Ready To Rumble!

September heralds the launch of Team Dystonia, a collective awareness effort spearheaded by a group of Dystonia organizations inviting us to paint the month a bright shade of orange. Team Dystonia...

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Dystonia Awareness: Wearing Our Hearts On Our Sleeves

If resolve alone sufficed to score White House recognition of Dystonia Awareness Month, the Dystonia petition circulating the World Wide Web would be a sure success. The petition drive showcases the...

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Make A Little Movement – II

You’re surely aware of Dystonia’s White House Petition – which is hanging around thru Oct. 9 – but I feel compelled to introduce a group of individuals who deserve a round of applause and laud a...

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A Hop, Skip & A Jump!

#JumpForDystonia is sweeping across cyberspace and I couldn’t be more excited. This inspirational awareness campaign launched by Dystonia Europe reminds us to live our lives joyfully and offers us hope...

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Our White House Petition Is Making A Comeback!

The Dystonia Community welcomes September wearing our hearts on our sleeves. Patients, advocates and the foundations that support us have banded together to advance a new petition requesting official...

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Lions, Tigers & Bears, Oh My!

Living with chronic illness, we must strive to celebrate the moments where we find ourselves and seek out occasions to celebrate. Zoo Walks are cross-crossing the country and I’m thrilled to welcome...

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Happy #GivingTuesday

Thanksgiving offers us a chance to give thanks for the treasures we enjoy – our families, friends, callings, the bounties decorating our lives. Most appropriately, Thanksgiving is followed by Giving...

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Lions, Tigers and Bears, Year 2!

Living with a rare disease like Dystonia, I find myself self-conscripted into service as a fundraiser. It’s all rather simple: If I don’t invite people to care about my little-known disorder, who will?...

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Disability Pride

Yesterday was my first occasion participating in New York City’s Disability Pride Parade and I couldn’t have been more proud and inspired by the very best New York City has to offer as I marched with...

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Lions, Tigers & Bears…Year 3!

As Dystonia Awareness Month approaches, I’m thrilled to fill in first place on my Dystonia Awareness Dance Card with the 3rd Annual Bronx Zoo Walk on September 10. This FUNdraising event has become my...

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Happy Holidays

Sending you my warmest wishes for Peace, Love and Joy this Holiday Season and a Happy and Healthy New Year! My Best, Pamela

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Lions, Tigers & Bears: Year 4

Heralding the Dystonia Medical Research Foundation’s 4th Annual Bronx Zoo Walk, I couldn’t be more hopeful of all the future holds for our community of Dystonia patients, mothers, fathers, sisters,...

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Virtual Lions, Tigers & Bears…Oh My! 🦁🐯🐻

The Dystonia Medical Research Foundation is packing September 12 with virtual fun to help us come together while keeping our distance! Gather with the Dystonia community for a special day raising...

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