Books and Music by the Dystonia Community

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


About the Author

Graphical user interface, text, application, chat or text message

Description automatically generated

People Like Frank

Jenn Ashton

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.

A Twisted Fate

Brenda Currey

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.

A picture containing text, person, person, female

Description automatically generated

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.

A picture containing shape

Description automatically generated

Beyond Pain and Suffering

Tom Seaman

Falling into Now: Memories of Sport, Traumatic Brain Injury and Education

Claire Smith

When a life-changing injury forces her to relinquish her equestrian identity, Claire Smith embarks on a journey of healing, recovery, and reinvention.

Woman of a Few Words

Cheri Tannenbaum

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.

A picture containing text

Description automatically generated

Singing in My Sleep

Thomas Wade

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.

A picture containing text, toy, doll, vector graphics

Description automatically generated

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.


Music Benefitting the Dystonia Community

Keith Emerson

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.

Please note: DMRF Canada takes no responsibility for the accuracy, currency, reliability, and correctness of any information included in the information provided by third parties to this website nor for the accuracy, currency, reliability, and correctness of links or references to information sources (including Internet Sites) outside of the Dystonia Canada website.

Links to other Internet Sites are for information only. Care has been taken in providing these links as suitable reference resources. However, due to the changing nature of the Internet content, it is the responsibility of the users to make their own investigations, decisions, inquiries about the information retrieved from other Internet Sites. Providing these links does not imply any endorsement, non-endorsement, support or commercial gain by DMRF Canada.

The material and information shared is for general information purposes only. You should not rely on the information contained here for making business, legal, or any other decisions. Please report any complaints or inaccuracies to

Last update: Nov 2021