Below is a list of additional resources you can explore to learn more about dystonia:
A non-profit foundation based in the U.S.A dedicated to advancing research into treatments and possibly a cure for dystonia. There is also its partner foundation, the Dystonia Medical Research Foundation (DMRF) Canada. In addition to funding research, both foundations are dedicated to providing patients with resources as well as organizing events and a network of volunteer-led support groups for patients to connect with one another. Their websites are a great place to read more about the disability, including stories written by patients with dystonia about their experiences.
A non-profit foundation much like DMRF in the U.S.A and Canada, but based in the U.K. While much of the resources here are similar to the ones available from DMRF, you may be able to find some additional information or better understand the broader dystonia community outside of North America.
A non-profit foundation founded by Michael J. Fox for advancing research and support for patients with Parkinson’s disease. While Parkinson’s is not the same as dystonia, some patients do experience some types of dystonia as a symptom of their Parkinson’s, and many of the research and resources from this foundation are beneficial to people with dystonia.
A medical association for American Neurological surgeons. This is generally a good source if you’re interested in the more technical and medical information related to dystonia and related neurological movement disorders. It is not an association where you will find support networks or patient-centered resources and stories.
A non-profit foundation dedicated to funding research and providing support to patients with Spasmodic Dysphonia (also known as Laryngeal Dystonia). Spasmodic Dysphonia is a unique dystonia in that it affects vocal cords, so while it may not impair a person’s movement and cause visible signs of disability, it does impair a person’s speech. This foundation has more resources specific to speech impairment, including links to assistive technologies patients with speech disorders can use, as well as rehabilitative technology.
The Dystonia Medical Research Foundation is a member of this broader foundation for rare diseases, as dystonia is considered a rare disease. Resources on dystonia from this website may be more general, but it is a good source for looking into many of the related foundations and discovering other patient groups for similar disabilities.
A small charity founded to support patients with blepharospasm, a dystonia of the eyelids, making it a good resource for blepharospasm specifically. Note that the term “benign” is actually outdated. Just like its use in “benign essential tremor”, many patients with blepharospasm still experience discomfort and loss of ability due to the possibility of impaired vision.
A resource developed by DMRF Canada based on the survey results from nearly 900 patients across Canada. Much of the survey was related to treatment using botulinum neurotoxin (more commonly known by one of its trade names, Botox®), but it does include an analysis of patient responses about their experiences and feelings towards having dystonia. While this is a useful resource, please note that it is not presented in an unbiased way. Many of the patient quotes selected throughout the report were chosen because they were very negative, which was primarily done to persuade healthcare providers, insurers and others to take dystonia more seriously and service patients better.
Another resource developed by DMRF Canada, which summarizes a lot of information about dystonia and provides information to resources patients in Canada can use to improve their condition. These resources include information for caregiver support, funding and more.
A non-profit foundation dedicated to funding research and providing support to patients with Essential Tremor. While not specifically about dystonia, essential tremor is a related neurological movement disorder and many of their resources can be useful for people with dystonia.
An organization for manufacturers, providers and sellers of assistive technology. This is a good resource for finding webinars about assistive technology and also to stay informed about various developments in assistive technology research and resources.
A non-profit organization dedicated to optimizing communication performance for people who use alternative forms of communication, such as sign-language or use of a text-to-speech device. You can find resources here that may be relevant to people with spasmodic dysphonia.
