Tag Archives: Health activist

Lions, Tigers & Bears…Year 3!

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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 pride and joy, a day to celebrate awareness and make our way one step closer to realizing our dream of curing dystonia. We should all remember:

When a star is born, They possess a gift or two
One of them is this, They have the power to make a wish come true

When you wish upon a star, Makes no difference who you are
Anything your heart desires will come to you

If your heart is in your dream, No request is too extreme
When you wish upon a star, As dreamers do

The Bronx Zoo Walk is a day for Dystonia dreamers to come together at the spectacular Bronx Zoo to gaze upon the amazing wildlife roaming the lush greenery and dream about days to come when we are free as an uncaged beast from Dystonia.

THE VITALS

What:  Bronx Zoo Walk benefiting the Dystonia Medical Research Foundation.

When:  Sunday, September 10, 2017. Registration opens at 8:30am. Event officially begins at 9:30am.

Where:  Bronx Zoo, Great Hall, 2300 Southern Boulevard, Bronx, New York. Use the Southern Boulevard Gate to enter the Bronx Zoo.

Why:  Because we can make our dreams come true… Raise awareness of dystonia and funds for better treatments and a cure.  Another reason: Our Zoo Walk Challenge is back. Every new and incremental donation over last year is being matched dollar-for-dollar by an anonymous donor!

How:  Register, start a team, create your own fundraising page. Teams with at least 10 members by August 28 will receive team t-shirts. Register online using the following link:  www.dystoniafoundation.redpodium.com/bronx-zoo-walk

You can Sponsor Me using the following link:  www.grouprev.com/bronxzoowalk-pam-sloate

DYSTONIA MOVES ME CAMPAIGN

You can also dance your way into dystonia awareness by participating in the Dystonia Medical Research Foundation’s Dystonia Moves Me campaign, which runs throughout the month of September. Obtain materials using the following link:  www.dystonia-foundation.org//shop/product_detail/14088

2017 Bronx Zoo Flyer

 

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Disability Pride

80489597_s copy_FotorYesterday 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 Mount Sinai Rehabilitation. As our joyous celebration wound its way through the city streets on a hot Sunday – 5,000 richly diverse human beings strong – we forgot the pounding sun as we shouted our disabilities from the rooftops.

“Disability Pride” teems with an inherent irony: Take pride in a lack of ability? Yes, we announce ourselves with pride and incite inclusion. What is more empowering than accepting – and loving – ourselves, imperfections and all? We puff out our chests in celebration of how we persevere…and more…notwithstanding our disabilities and of all we overcome amid the daily muck muddying but by no means devaluing our lives. Whether we’re wheelchair bound, deficient in sight, gait, hearing or speech, struggling with learning or mental deficit, suffering from a disability that is “hidden” or glaringly evident, we take heart in our robustness of spirit as we bend and sway but never break in response to the challenges we face and conquer.

I am Pamela Sloate. I have Dystonia and I’m proud!

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Lions, Tigers and Bears, Year 2!

9287823_s editedLiving 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? Curing Dystonia takes a village of patients, friends, and families…not to mention the medical investigators working diligently on our behalf!

I’ve also discovered that FUNdraising can indeed be FUN. Dystonia Zoo Walks empower us to advance our cause while checking out lions, tigers and bears, oh my!

For those who live in the New York City area, I hope to see you on September 18 for a memorable day of Dystonia fundraising and awareness at the Bronx Zoo. We offer a unique “twist” on traditional charity walks, as there’s no formal walking course. Jump-start your Sunday with family-friendly festivities – perhaps win a raffle prize – and then meander your way through the fabulous Bronx Zoo. Of course, you’re welcome on board Team Dystonia Muse! Can’t join in the fun? We’ve got you covered. Support us by making a donation.

Use the following link to register:  Bronx Zoo Walk Registration
You can sponsor me here:  Pamela Sloate’s Personal Page

From the bottom of my heart, I thank you for reading this blog and supporting my journey. With a team effort, we can eradicate Dystonia!

-Pamela-

2016 Bronx Zoo Walk Postcard Image

 

 

Happy #GivingTuesday

45088058_s editedThanksgiving 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 Tuesday, a day bestowing the opportunity to actively express our thanks for all we have by giving to the causes in need of our support.

For me, this Giving Tuesday is particularly poignant as I celebrate The Martin & Roberta Sloate Dystonia Research Fund and the hope it embodies as we look forward to a better tomorrow. I’m forever grateful for my parents’ wide-reaching contributions to the Dystonia community in a heartfelt effort to make my world a better place and catalyze critical support for all families impacted by Dystonia.

I invite everyone to join with me in sending out a message of hope today on the occasion of Giving Tuesday. You can donate to the fund established in my parents’ honor at the Dystonia Medical Research Foundation, a place they called home, using the following link: The Martin & Roberta Sloate Dystonia Research Fund.

xxx

Pamela

Lions, Tigers & Bears, Oh My!

9287823_s editedLiving 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 the inaugural Bronx Zoo Walk to the Big Apple on Sun., Oct. 4, 2015.

This event is so much more than a FUNdraiser – it’s a wellspring for our hope and fuels our unity of purpose. Conditions like Dystonia disempower us from exercising full bodily autonomy as we transact the business of our everyday lives. The Zoo Walks present an opportunity to transform ourselves into empowers working to secure a better tomorrow. We’re looking to take one ferocious bite out of Dystonia and cage that wild beast!

I invite everyone to join the tri-state Dystonia community for a day of awareness and hope at the Bronx Zoo on Oct. 4. Proceeds benefit the Dystonia Medical Research Foundation (DMRF). You can register using the following link:  Bronx Zoo Walk Registration

Enjoy the zoo as part of Team Dystonia Muse by inputting “Dystonia Muse” as your team when registering. Note there’s no racing involved, just a leisurely day at the Bronx Zoo. If you’re unable to attend, you can join us in spirit by making a donation to Team Dystonia Muse here:  Donate To Team Dystonia Muse

I must include a warm thank you to the partners helping to ensure that the Bronx Zoo Walk is a memorable day: Allergan, Amsterdam Ale House, Bella Face Painting, Ben Asen Photography, Caricatoonist, Chocolate Works, Church Publick, Feinstein Institute for Medical Research at North Shore-LIJ, Ipsen, Lucy’s Whey, Magnolia Bakery, Massage By Touch Evolution, Merz, Mount Sinai Beth Israel, Parlor Steakhouse, Sarabeth’s, Serafina, Superior Soundz Entertainment, Third Avenue Ale House, US WorldMeds, Whole Foods Market, William Greenberg Desserts.

Check out these upcoming DMRF Zoo Walks:

Cincinnati Zoo Walk, Sept. 12, 2015
Register here:  Cincinnati Zoo Walk Registration

Cleveland Zoo Walk, Sept. 19, 2015
Register here:  Cleveland Zoo Walk Registration

Binghamton Zoo Walk, Sept. 19, 2015
Register here:  Binghamton Zoo Walk Registration

Pittsburgh Zoo Walk, Sept. 27, 2015
Register here:  Pittsburgh Zoo Walk Registration

POST SCRIPT-  Visit my Bronx Zoo Walk Photo Album on Facebook using the following link:  Bronx Zoo Walk Album.

Team Dystonia Muse

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!