Our Mission

Down with Dystonia strives to support, educate, and empower people living with dystonia and their families while raising awareness about this third most common movement disorder.

Vision

Our vision is a future where dystonia is recognized and diagnosed early, and where successful treatments are found so that the condition does not limit the potential of any individual. Until that vision is realized, we will be here to provide resources, encouragement, and to push constantly for further research and options.

How We Do It

Using cutting-edge technologies, art installations, music events, and training programs, we are actively building relationships with medical centers, universities, and research groups to educate our communities about dystonia. We engage with individuals living with dystonia to support them in seeking therapies that meet their personal needs, regaining control of their lives, and pursuing their personal or professional goals. Areas of focus include:

  • Sharing Stories  – Videos and blogs that allow us to learn from one another and share our journeys living with dystonia

  • Digital Content – Developing informational videos, web content, and social media posts to engage the public and provide in-depth information for people living with dystonia

  • Presentations and Training – Expand awareness in communities and among medical professionals and first responders about dystonia

  • Support and Encourage – Provide opportunities for people living with dystonia to connect with each other through social activities and online forums

  • AdvocateEngage with researchers, pharmaceutical companies, and legislators to pursue a cure for dystonia, treatment options, and acknowledgement on the federal qualified disability list

Why We Do It

It is estimated that dystonia affects 3 million people across the globe and an estimated 300,000 families in North America alone. In its long and complex history, this condition has been misunderstood at every turn. Historically, patients were misdiagnosed with psychological or “nervous” disorders. Today, people may undergo years of testing while ruling out other conditions and waiting for symptoms to progress before receiving an accurate diagnosis. Recent studies and technological advancements have made more accurate diagnoses and effective treatments more readily available. We established Down with Dystonia to help connect people seeking a diagnosis and those living with dystonia to these methods, doctors, and resources.

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

Another important piece to completing the dystonia puzzle is neurological research and professional opportunity for those pursuing treatments or a cure for dystonia. Down with Dystonia will highlight these deficiencies and fight for expansion in both of these 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 of dystonia — erasing it from society by finding a cure or greatly diminishing its impact with effective treatment options. We will advocate for additional research at universities and pharmaceutical companies. We will work with legislators to seek additional funding for this research. We will make our voices heard until dystonia ceases to play a dominant role in the lives of people diagnosed with this condition. The second take on down, the meaning closest to our hearts, refers to the emotional and mental stress that dystonia can have on patients. Limb contractures can take away independence or job skills, communication may become frustrating, and there may be days when the pain is overwhelming. These struggles take a toll on the mental and emotional health of people living with dystonia and those who support them. We acknowledge this fight and vow to stand toe-to-toe with any patient, with any family, against the darkness of hopelessness. The third down reflects the positively energized spirit with which we intend 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. Although our roots are in California, our founder, board, and volunteers are all motivated to increase awareness about dystonia throughout the United States and across the globe. We want to connect every person living with dystonia to cutting-edge information, online or local support groups, and other people who can share their journey. We want everyone in our community to be down with dystonia. Will you join us? Our presentations, digital content, and social events are made possible through the generous contributions of community members, foundations, and corporate sponsors. Will you help us take down dystonia?

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WHO WE ARE

UNDERSTANDING DYSTONIA

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© 2019 Down With Dystonia - All Rights Reserved. We are designated tax-exempt under section 501(c)3 of the Internal Revenue Code.
Tax ID 46-1319824. Your contributions are tax-deductible to the fullest extent of the law.

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