Tag Archives: September

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

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.