DEVIN McCLERNAN

Founder’s Story

Devin was diagnosed with dystonia at the age of thirteen. For more than twenty years, his extraordinary journey has provided him insight on how he can use his experiences and talents to cultivate a better quality of life for those afflicted with his disorder.

His dedication to founding and growing Down with Dystonia comes with an intense desire to better the lives of others with his affliction, and their families, through his experience and willingness to gain and share knowledge on a subject still so misunderstood.

This is his story …

As a happy and healthy young boy, Devin was active, athletic, and lived a normal life. He started to lose his ability to speak after a routine orthodontics appointment. Nothing has been the same since.

It took many doctors and visits for a diagnosis of the neurological disorder, dystonia, to be made.

His symptoms worsened. Prescription drugs did not alleviate his discomfort. He experienced repetitive spasms, twisting, abnormal postures, pain in his neck, back and jaw, as well as uncontrollable tongue, head, and mouth movements. Nothing seemed to help.

Still, Devin kept a smile on his face as he experimented with new treatments and doctors.

His symptoms worsened. Prescription drugs did not alleviate his discomfort. He experienced repetitive spasms, twisting, abnormal postures, pain in his neck, back and jaw, as well as uncontrollable tongue, head, and mouth movements. Nothing seemed to help. Still, Devin kept a smile on his face as he experimented with new treatments and doctors.

On March 4, 2008, his life changed once again, the day he received a Deep Brain Stimulation implant. Over time, his symptoms lessened. His speech and movement returned to levels he could control and he became self-sufficient in his improved health. Doctors cleared him to live life to the fullest and that’s exactly what he’s done.

In 2014, he wrote, directed, produced, and shot a short film about his experiences for the Neuro Film Festival in Philadelphia, Pennsylvania. The event is an annual contest presented by the American Brain Foundation to raise awareness of the need for research funding for neurological disorders. His work, Dystonia Devin, and was awarded Grand Prize, earning high marks for polish and creative execution. This achievement set him on a path toward professional multimedia production and management.

He now lives and works in Los Angeles as a philanthropist, filmmaker, and producer. He has worked behind-the-scenes at major music events and festivals, assisted in the management of high-profile promotional tours, and is even an FAA licensed drone pilot.

Through his work with Down with Dystonia, he aims to help patients through the winding, and often painful, journey through their diagnosis and effective treatment, encouraging them to live their lives exactly as they wish to

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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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