Ive decided that I will take time to do a quick 'spotlight' on the many Dystonia non profits out there (that I can find) in no particular order under the advocacy portion of my blog... There are many different types of dystonia, and many organizations have decided to focus on specific forms.. This is helpful because there are sooo many people affected with the disorder I am sure one organization would be overwhelmed. My blog is not an endorsement of any non-profit. I volunteer wherever I am needed.. and have no money to donate. If it helps dystonia (any type) it helps me...
ST/Dystonia is a 20 year old non-profit helping people with spasmodic torticollis (also known as cervical or neck dystonia) It provides information and support for people affected with this type of dystonia including a Disability kit to help its members file for SSI. They also sponsor informational events for the dystonia patient community.
Its website has a wealth of information for coping with cervical dystonia.. many of which are appropriate for other forms of dystonia. They also have an online forum.
ST/Dystonia is a member of the Dystonia Adocacy Coallition and participates in legislation affecting the dystonia community
For more information about this organization check out their website http://www.spasmodictorticollis.org/
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