Wednesday, June 27, 2012

DMRF Launches "20/30 Dystonia Group"

The DMRF’s amazing network of members and volunteers is one of the organization’s strengths. We are grateful for the feedback we receive from the community because your suggestions help us improve our programs. A request we heard loud and clear was the need for improved resources for individuals in the dystonia community ages 20-40, and especially an online forum to help people in this demographic connect with one another. The DMRF was proud to launch the 20/30 Dystonia Group this week, and have been very gratified by the positive response. Many thanks to volunteer administrators Marcie Povitsky and Ginny Bryan for welcoming people to the group and sharing their own experiences with dystonia to help support others.  And special thanks to Marcie for taking a leadership role in making this new Facebook group available.

Visit the 20/30 Dystonia Group at:

This is the newest of several Facebook groups the DMRF has created this year, and more are planned. Click here to access a list of all DMRF online resources.

Your phone calls, emails, social network postings, and mail are constant inspiration for the DMRF to do more, try harder, reach farther. Please continue to let us know how we can serve you better.

Tuesday, June 5, 2012

Dystonia Awareness Week, June 3-9, 2012

June 3-9, 2012 is Dystonia Awareness Week. Although promoting dystonia awareness is something the DMRF is devoted to doing year round, this week represents a special effort to rally all of us in the dystonia community to combine our efforts for maximum reach.

This year, the DMRF is using Dystonia Awareness Week to launch the Face2Face campaign. We’re encouraging individuals who have been impacted by dystonia to do what many of you already do: to share your story with the people in your everyday lives.  We encourage you to take a moment to educate your neighbors, acquaintances, friends at the dog park, wait staff at your favorite restaurant, tellers at the bank. The DMRF can provide simple materials to support you in this effort:

Your dystonia story is a powerful instrument for awareness. Who can predict the lives you may change for the better by sharing your experiences and opening up about your or your loved one’s diagnosis?

Amy Behar and Silas Courson of Dallas used a backstage visit at a Flaming Lips concert to educate members of the band on dystonia. Val and Ernie Inman, leaders of the Tampa Bay Dystonia Support Group, created a “What is Dystonia?” QR code to help inform the tech savvy among us. We are impressed by the creativity of our volunteers to get the word out and educate the public about dystonia.

Please update us on your awareness efforts by joining a special Face2Face group on Facebook and sharing how you are promoting awareness: Don‘t be modest – we’d love to hear from you!

Thank you for your support. We appreciate each and every one of you.