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...
Care4Dystonia, Inc. is 'a nationwide community-based health organization dedicated to Setting the PACE: Patient Care, Awareness, Collaboration and Education for the dystonia community and the general public.' It brings high level dystonia information to the dystonia patient community, while serving as an advocate for patients navigating through the medical community. The organization provides a PDF newsletter, online support groups and forums, and lots of dystonia information (geared towards patients) on their website. They also sponser a health advocate forum on Wego Health Care4Dystonia are also involved with fundraising campaigns geared at increasing dystonia awareness. Care4Dystonia is founded by Nurse Beka Serdans, a dystonia patient, who brings her professional and personal commitment to dystonia patient care to the organization. For more information about this organization check out their website http://www.care4dystonia.org/
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Dear friend.
ReplyDeleteI suffer from Generalized Dystonia, and my symptoms are lack of skill, cramps, pain, tremors and so on since I was 11, more than three decades ago.
Just 2 years ago I designed a web to help positively to other people like me and the caregivers (it includes free physiotherapy advice) which has helped many people the same way I've been helped.
http://webs.ono.com/distoweb and its message may help you.
Hope it does. Sharing and understanding are our best tools...