The dystonia community is filled with resilient and inspiring people. Below is a collection of books and music that has been developed by individuals from the dystonia community that are helping to make a difference.
Books for the Dystonia Community
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About the Author |
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People Like Frank |
Jenn is one of our 2020 Jackson Mooney Patient Grant recipients. She has written fiction, non-fiction, and children's books as well as editorials and articles for periodicals and journals. She is a board member of the Federation of BC Writers and the Indigenous Writer's Collective. Jenn is also a graduate of Simon Fraser University's Writer's Studio where she now works as a teaching assistant. |
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A Twisted Fate |
Brenda Currey Lewis has lived with generalized dystonia since 1974, when she was seven years old. Brenda was the president of the Edmonton Dystonia Support Group for twelve years and is still involved in raising funds and lending guidance to newly diagnosed dystonia patients. |
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Diagnosis Dystonia: Navigating the Journey Tom Seaman |
Tom Seaman developed dystonia while pursuing his master's degree in counselling in 2001. After numerous ineffective treatments and years of debilitating physical and mental pain, Tom learned and applied a combination of techniques that greatly improved his quality of life. Utilizing his education and the tools he learned from his significant life challenges, Tom now dedicates himself to helping others take control of their lives. Tom is also a health and wellness blogger, motivational speaker, and a support group leader for the DMRF. |
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Beyond Pain and Suffering Tom Seaman |
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Falling into Now: Memories of Sport, Traumatic Brain Injury and Education |
When a life-changing injury forces her to relinquish her equestrian identity, Claire Smith embarks on a journey of healing, recovery, and reinvention. |
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Woman of a Few Words |
During college, Cheri Belzberg, daughter of DMRF founders Samuel and Frances Belzberg, began experiencing bizarre, debilitating symptoms, which progressed until she found herself unable to speak or walk normally. Thus began her two-year journey to a proper diagnosis. Having no choice in the matter, Cheri went on with her life. She fell in love, got married, obtained a bachelor’s degree and a master’s degree, had three miracle children, became a grandmother, and along the way learned how to live, love, cry, and overcome with a serious disability. |
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Singing in My Sleep |
Canadian country music artist Thomas Wade began his solo career in 2000 with Shoreline Records. Then in 2001, Thomas was diagnosed with Oromandibular Dystonia which appeared to be the end of Thomas’s career. Due to cutting edge work in neuroplasticity, and Thomas’s commitment to learning as much as he could about the brain, hypnosis and the mind-body connection, he began to heal early in 2010 and is now in the studio with his new album Blue Country Soul. |
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Never Look Down Zachary Weinstein & Alyssa Dear |
Zachary Weinstein and his mother Alyssa Dver wrote a book entitled “Never Look Down” in partnership with DMRF so that other children like Zachary feel empowered, not diminished, by this illness. The title is taken from Zachary’s personal motto for overcoming obstacles.
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Music Benefitting the Dystonia Community
The Official Keith Emerson Tribute Concert is a concert film features performances by over two dozen prominent artists in rock, jazz, and classical music as well as artist interviews, behind-the-scenes footage, tribute speeches, and a gallery of personal never-before-seen photos from the Emerson estate. This recording captures the essence of what made Keith Emerson a pioneer of progressive rock, a treasure among his many fans and friends, and a legendary keyboardist and composer with the iconic supergroup Emerson, Lake & Palmer. The program is available on disc and via download.
All of the artists, crew, and support personnel generously donated their skills and time to bring visibility to musician’s dystonia and support research toward a cure. Proceeds from The Official Keith Emerson Tribute Concert disc set benefit The Leon Fleisher Foundation for Musicians with Dystonia, a program of the DMRF.
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