Mission: How and Why

It is important for us, as it is for any non-profit, to be as transparent as possible with respect to our fundraising and operational efforts. It is with transparency that organizations like ours can best partner with the public, foster an environment of ideas, and ultimately, make a real difference in people’s lives.

Through partnerships and collaborations with artists, researchers, doctors, community leaders, and artists, and under the direction of an internationally established steering council, we believe that we can facilitate that impact.

Taking a step back, we also hope to influence positive change in the way people communicate with one another in the field of medical research, diagnosis, and treatment. Too often, we have seen instances where groups of people, be it experts, investors, doctors, patients, and their families, can and are willing to support one another but are limited in the ways they can do so, either by legislation or other means of disconnect. In an age where information is endless and everywhere, we hope to develop channels of collaborative communication between these groups, sharing data and experiences, leveraging the power of community and knowledge for the betterment of everyone.

Our goals don’t end there. While dystonia remains the focus of our work, in the future, we hope to apply lessons learned from campaigns and fundraising efforts to an expanded set of causes in the neurological and greater medical field. We won’t be able to do it alone.

How

The Down with Dystonia team will organize and produce interesting and impactful content to be delivered through any number of media channels and activations, both digital and in-person. Some areas we will focus on are:

  • Patient stories | Videos and blogs so we can learn from one another
  • Informational videos | Social media content for the masses
  • Social media engagement | To build and sustain a support system for patients and their families
  • Expand web content | To create a more in-depth information resource
  • Printed materials | To leave behind at talks and meetings

These campaigns will be funded by public donations made to Down with Dystonia. In a to-be-determined ration, funds will also be allocated to directly support the research of dystonia and development of even greater treatment options. These decisions will be informed by our esteemed medical council.

Similarly, we are involved in lobbying for the inclusion of dystonia on the Federal approved disability list in the United States of America. This is an oversight where are passionate about enacting change.

Why

It is estimated that dystonia affects the lives of 200,000 families in North America alone. In it’s long and complex history, it has been misunderstood at every turn. Recent studies and technological advancements have made more accurate diagnosis and effective treatment more readily available. Our main reason for launching Down with Dystonia is to better connect patients to these methods, doctors, and resources.

That access starts with general awareness. We want to make dystonia a commonly understood medical term so that parents and primary care physicians alike can recognize symptoms in children, kick-starting their road to proper treatment.

Another important piece to this puzzle is the lack of neurological research and professional opportunity. Focus will also be put on highlighting these deficiencies and fighting for expansion in both areas.

Down—Down—Down with Dystonia

As for our name, the word Down carries three distinct feelings and meanings …

The most obvious, the one seen sharpest in our mind’s eye, refers to the taking down, in metaphorical sense, of dystonia — erasing it from society with a cure or greatly diminishing its impact with aggressive campaigning, advocacy, and information sharing.

The second take on down, the meaning closest to our hearts, refers to the emotional and mental stress that dystonia can have on patients. The physical symptoms are sometimes visually jarring, speech can be frustratingly slurred, and the pain can overwhelming. Although not a cognitive disorder, dystonia takes a toll in more ways than can be easily diagnosed and treated. We acknowledge that side of the fight and vow to stand toe-to-toe with any patient, with any family, against the darkness of hopelessness.

The third reflects the positively energized spirit with which we intent to conduct ourselves and this organization. Being down with something is another way of showing support, you’re hip to the cause, willing to take part, you get it. In that way, we want everyone to be down with dystonia.