Tag Archives: Social media

Our White House Petition Is Making A Comeback!

24351216_s EditedThe 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 White House recognition of Dystonia Awareness Month. The magic number is 100,000 signatures by Sept. 24 and we’re amassing them one by one!

I urge everyone to stand with us in what is truly a collective effort. It only takes a minute to sign – how about sharing with five friends? Anyone age 13 or older living anywhere in the world can participate. Those outside the U.S. simply leave the zip code blank. Remember, your signature isn’t complete until you click on the confirmation link the petition site will email you.

Make a difference by signing here:  White House Petition.

It wouldn’t be September without a “Flash Mob.” We’re celebrating Dystonia Awareness Month with a social media block party! Join in the fun using the following link:  Dystonia Awareness Month Flash Mob.

Happy Dystonia Awareness Month!

xxx

Pamela

A Hop, Skip & A Jump!

26418170_s Edited#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 that our seemingly elusive dream of freedom of movement is but a hop, skip and a jump away!

When was the last time you embraced a leap of faith? How often have you jumped for joy, jumped into the conversation, jumped to a conclusion…or jumped off that proverbial cliff? How about taking a flying leap and jumping for Dystonia?

There’s no better way to begin than a jump-start! Join our #JumpForDystonia Flash Mob this week (July 13-19) to ignite a wildfire of awareness across social media. Simply share a pic or video showcasing your best – or most creative – jump accompanied by the hashtag #JumpForDystonia. Pole vaults, long jumps, ski jumps and jump shots are all welcome. Enlist friends family and work colleagues. Let’s get the whole world jumping for Dystonia!

Check out our Flash Mob Event:  #JumpForDystonia Flash Mob

Enter the Photo Contest:  #JumpForDystonia Photo Contest

They say a picture is worth a thousand words. This #JumpForDystonia video is worth a million:

Make A Little Movement – II

19927674_sYou’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 community that made more than a little movement to advance our cause.

Mike Delise is an advocate for patient Jason Dunn who’d carry the entire Dystonia community on his back if he could. Mike conceived the petition last Spring and refused to be deterred when it didn’t take off, planning a second effort for September. Mike has gone the extra mile for Dystonia, earning himself permanent membership in our family.

Then there’s Treacy Henry, a determined Dystonia patient who’s the juice behind dystoniaaware.org and the Make September Dystonia Awareness Month Facebook and Twitter communities. She’s devoted heart & soul to gaining White House recognition of Awareness Month and stands an amazing example of activism in action. Treacy’s daily communications have been the fuel keeping our community focused on our goal.

Kudos go to Angela Winnick for conceiving the recent Twitter Flash Mobs prompting us to head to Twitter to raise a united voice promoting #DystoniaAwareness. In less than a week, these Flash Mobs catapulted #DystoniaAwareness to trend #1 on Twitter, not bad for a rare and little known neurological disorder!

I couldn’t be more proud of our community…or more appreciative of the friends who’ve come forward to support us. I invite everyone to join tonight’s Flash Mob at 7pm ET. Visit our Facebook Event for a list of Tweets targeting news media and celebrities. Here’s one anyone can use: “Challenge you to a RT to support #DystoniaAwareness! www.dystoniaaware.org

xxx

Pamela

Dystonia Awareness: Wearing Our Hearts On Our Sleeves

photo-29If 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 determination of our community to educate our nation’s leaders and the public at large about our rare disorder – making life a little bit easier for all of us. Dystonia thrusts us into a constant physical battle with involuntary movements holding our bodies hostage. Awareness is that critical first step fueling our hope for a cure!

Getting down to the numbers, Dystonia is a small disease community in need of friends. Please join our movement to spread awareness by visiting the following link: White House Petition. Anyone age 13+ worldwide can sign. We have until Oct. 9 to collect 100,000 signatures. Contributing your signature and sharing with friends are small actions that go a long way towards putting Dystonia on the map.

Post Script: I invite everyone in the New York City area to head to Rockefeller Plaza the morning of Sept. 18 to participate in our Orange Splash at the Today Show dystonia awareness event.

And please, let’s not forget:
Balance Awareness Week from Sept. 15-21, 2014
International Ataxia Awareness Day on Sept. 25, 2014
National Prostate Cancer Awareness Month in September
National Breast Cancer Awareness Month in October
National Alzheimer’s Disease Awareness Month in November
American Diabetes Month in November
Lung Cancer Awareness Month in November
Rare Disease Day on Feb. 28, 2015
National Essential Tremor Awareness Month in March
National MS Education & Awareness Month in March
Parkinson’s Disease Awareness Month in April
Huntington’s Disease Awareness Month in May
Lupus Awareness Action Month in May

Team Dystonia: Get Ready To Rumble!

TeamD061013-ASeptember 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 presents an opportunity for us to mobilize as a community. We’re fighting for nothing less than a healthier tomorrow…for ourselves and future generations. We stand as strong as our efforts and multiply our power when we work together towards common goals, generating a synergy that exceeds the sum total of our individual performances. I urge one and all to embrace collaborations like Team Dystonia and invite friends to join with us as we ignite the spirit of unity to broaden human understanding. We’re a small, unknown country in need of ambassadors. Promoting awareness accomplishes a critical step along the path to a cure.

Come September, let’s jump into the pool with a collective orange splash that ripples far and wide. Reach out to family, friends and strangers to spread the word about Dystonia. Simple deeds are as welcome as grand gestures. Check out the following awareness events planned for September:

White House Petition
Pump up the volume to help designate September Dystonia Awareness Month. Sept. 1 our online White House Petition goes live and we’ll have 30 days to gather 100,000 signatures. Individuals 13 years of age and older can participate and we’re taking signatures worldwide. Please join our Facebook Event and share on your social media to help us reach our magic number! Here’s a direct link to the petition: White House Petition.

Hashtag #TeamDystonia
Social media mavens, get cookin’ with the #TeamDystonia hashtag! Create your own concoctions that yield a whole lot of buzz! Doesn’t matter where you live, the Internet spans worldwide. Anyone can be an activist so make a little movement!

Splash Of Orange
Our theme color is orange, get those creative juices flowing! Catch the orange fire, lace your sneakers with orange sizzle, color your profile a bright orange hue, enjoy an orange-streaked sunset looking forward to the day the sun sets on Dystonia. The possibilities are as bright as a gleaming orange fireball.

Dystonia Moves Me
During September, the DMRF invites everyone affected by Dystonia to share their story with 30 people in 30 days. Contact awareness@dystonia-foundation.org to request a “Dystonia Moves Me” kit.

 

 

 

Bon Anniversaire!

14605022_s editedA 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 self-view removing shame from my equation, embarking upon an exploration of alien territories within myself and new roadmaps to human understanding.

My blog marked the end of one odyssey and the beginning of another, perhaps even more transformative than the first. I set out with lofty goals – no less than unburdening my soul, sharing deeply felt insights and describing my strange disorder without it sounding like a virulent medical horror, starting with the post pinned to the top of this site. I ventured into foreign lands endlessly more foreboding than the manipulative villain lurking in my brain. I’ve tackled my deepest nightmares of how I might present to others, wildly misplaced self-phobias, misinformed perceptions of disability, even notions of sexuality.

In the span of a year, I’ve hurled myself into relationships I never could have imagined, discovering like-minded people who once manifested as unintelligible to me as Dystonia previously stood to many of you. Indeed, I’ve introduced some of my new friends on the pages of this site, individuals who’ve helped me see myself in a new light and shine like multiple suns on my brightly lit world. I stepped beyond the human threshold, which often paints a wholly uninformative picture, and with a lingering look found overwhelming commonality that speaks to our shared spirituality. Notwithstanding an abundance of horrid descriptives I’d love to banish from the dictionary, chronic illness and disability can be a curtain masking healthy and entirely “able” human souls.

As my own personal muse, I strive for optimism to guide my way. “Dystonia Muse” is as much a compilation of my finest aspirations and intentions – forever inspiring me to walk forward – as a hard and long-earned life lesson. Everyone has an internal muse, an ideal self we formulate through sweat, tears and tenderness and strive to hold, the person to whom we ever inch closer as we journey through our lives, the best of our hopes and desires, an amalgamation of our loftiest dreams fueling us to press onwards.

16905028_s editedVenture beyond the surface differences that separate us, look inside yourself, brave your singular waters, seek profound truths, and you can begin your own personal expedition to discover the infinitely understandable human story and boundless reach of your heart.

Pamela Sloate – Decidedly “OUT” of the Dystonia closet!

Post Script: Here’s a warm thank you to new friends who’ve made a world of difference in my life: Marissa, Robyn, Rhiann, Peggy, Chris, Carrie, Lisa, Andrea, Rebecca, Shannan, Juliet, Patty, Jan, Denise, Allison, Sarah, Ed, Arthur, Divanicio, Lars, Franz, Robert, Gohei, Arash, Bruce, Pat B., Nick, Gary. I mustn’t forget Duncan and a handful of “Aussies” on Twitter – Jacinta, Tara, Francine, Jane, Ray, Archie, and Larry – who make “chirping” a delight!

Make A Little Movement!

19927674_sThis 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 spawn a bit of mainstream news. Indeed, injecting our “Dystonia Awareness” stories into a stream of iReports waiting to be discovered by other iReporters, iReaders and yes, CNN editors, secures its own victory.

Ostensibly, I joined this “Movement” to speak about my “movement.” Then I began to ponder the deeper meaning of our task. My first thought was how my story isn’t simply about me or even Dystonia. It’s about omnipresent realities that touch people everywhere: feeling different, struggling, embracing hope, promoting understanding, believing in an energy beyond ourselves. My greatest compliment is when people see glimmers of their stories in mine. Maybe it’s a physical experience, moment of humor or obstacle overcome. If my blog preaches anything, it’s how we’re all part of one encompassing narrative. Our individual plot lines enrich the world with variety. Our common thoughts and emotions keep us interconnected. My goal of explaining Dystonia is readily achievable by appealing to ideas that reside within all of us and the exercise of imagination. Our iReports stand as a collective effort to introduce our little-known cause and help you to learn just one part of who we are. For me, the goal is human empathy as much as publicity.

We all make movements and (hopefully) we also join Movements. The past year marked my introduction to the dynamic force of Health Activism. I’ve come to see that activists are nothing less than human beings realizing our potential to care about one another and the world we inhabit. Start by “activating” your mind. Direct your thoughts beyond yourself, engage in dialog with others, set forth to grow as a person and in the process you’re bound to inspire others. I started my blog out of a compulsion to share truths I’d stuffed deep inside for way too long. I activated my mind to think in new ways and planted seeds in my garden that flourished.

I invite you to make that all-important first step. Undertake an intention to advance a cause or truth you find significant. Perhaps it’s Dystonia. Maybe an entirely different enterprise “moves” you. Start a Movement, join a Movement but be sure to MOVE in a meaningful direction!

You can endorse our effort by selecting “This belongs on CNN” at the end of each article. Here’s my contribution: Pamela’s CNN iReport. This is a joint effort: Dystonia may be the engine but you’re the steam propelling us forward!

Kudos to Lori Raines, who conceived this event in the first place and encouraged us to get going!

Dystonia BloggerMania

11849272_sDystonia Awareness Week may have passed but make no mistake, the flame burns on. I’m proud to participate in Dystonia BloggerMania, the continuing celebration of Dystonia activism rocking the World Wide Web. Think of us bloggers as “reality journalists” – patients, parents and children determined to shake up cyberspace by flinging out our stories for all the world to learn. No scripts in this mass exercise of reality writing, just a flow of words coming straight from the heart.

Having spent the better part of a year revealing my deepest, darkest secrets, I undertake the utmost admiration for the raw honesty displayed by my blogging buddies as they share their innermost thoughts and personal struggles. While publishing our “diaries” can be a hairpin curve, we gain a tremendous sigh of relief from facing our demons and laying everything on the line. Take one step outside your comfort zone and the other foot will follow. Before you know it, you’re off on a brisk run.

Come join us. Blog for yourself, for your community, to enlighten the ignorant. Tackling the blogosphere is seizing a ripe moment to make a splash in the pool and practice your swimming strokes. Blogging entails publicizing a kaleidoscope of challenges constituting a difficult day in the hope of connecting with those in need of hearing us. We’re working through the most personal of issues in a public form of therapy as part of a never-ending journey to find invisible upsides amid the all too visible downsides of life. Blogging enables us to combat narrow-mindedness by offering up our intimate details as examples of the wealth of human diversity. We abandon great big chunks of our privacy for the greater good of educating friends and strangers about the insidious criminalities of our disorders. Our collective impact is realized post by post, read by read.

My Facebook group – Dystonia BloggerMania – welcomes Dystonia bloggers (and our fans). Truly, we’re sprouting all over the web. Visit our sites for a multiplicity of vantage points on life with Dystonia…and beyond. Don’t forget to leave your calling card – comments are the hot fudge topping on our ice cream sundaes!

Here’s our road map:
Shayla Anthony, Bekah the Ballerina
Tracy Blowers, Brand New Day 
Carrie Siu Butt, Run Carrie Run!
Desiree Castillo, Walking Forward
Matt Lawrence, it’s my life
Lisa Marie, Little Writings
Rebecca Moller, dystonia and me
Divanicio Pessoa, Homens De Bem