September is Dystonia Awareness Month


As far as we know, we are the only two dystonia advocacy groups formed by and run for people with dystonia.  We are all volunteers and are not industry supported.  Please help us raise our voices! 

Most of us waited for years in isolation and suffering before we were diagnosed, going from doctor to doctor.  We have started a petition to designate September Dystonia Awareness Month in the United States.   Please add your name to the petition. We won’t pass along your information to anyone else.  Promise!  

Awareness is a process. We are passionate and will not give up. Clicks must be received by Tuesday, September 30, 2014. Here is a list of supporting partner organizations

Please forward this petition liberally to family, friends, colleagues, patients, anyone.  Anyone, anywhere, over 13 years old can sign.

Thank you,

Treacy Henry, Make September Dystonia Awareness Month
Lori Raines, Neuronauts Now
Sign Petition Now

Announcing the sixth annual competition for the Annemarie Opprecht Parkinson Award

We are happy to announce the 6th competition for the prestigious international award for research in Parkinson’s disease which is sponsored by the Annemarie Opprecht-Foundation (Switzerland).

The award will be presented in 2015 with a sum of 100,000 Swiss francs. Deadline for submission is 31st March, 2015. All papers presenting significant results or findings in all areas of research in the field of Parkinson's disease (e.g. Basic Sciences, Epidemiology, Treatment, Social Impact, Economical Aspects) should be considered for application.

All researchers in the field of Parkinson’s disease should learn about this ambitious award. Therefore, please inform all interested members of your Department/Hospital/Clinic/Laboratory, your co-workers and research teams active and interested in the field of Parkinson’s disease about this unique opportunity.

All details regarding the award such as conditions for submission, addresses, contacts and
deadlines can be found on the Foundation’s website.

M. Sturzenegger, MD
Professor of Neurology
President of the Prize Committee

Introduction to DBS Course Offered October 6-10, 2014

Greenville Neuromodulation Center (Greenville, PA, USA) announces a professional education and training course: Introduction to Deep Brain Stimulation.

The course takes place October 6-10, 2014 and is limited to 25 physicians, nurse practitioners, physician assistants, nurses, technical and industry professionals new to or updating DBS skills (Introductory Level).

The themes include: What is DBS, what disorders does it treat, and who is a candidate? Dealing with emergencies involving patients with implanted DBS systems and post-operative programming.

  • Module 1 (October 6-7; $695) DBS patient selection (including optimizing medical treatment), risks and benefits
  • Module 2 (October 8; $195) Emergent care for patients with implanted DBS systems
  • Module 3 (October 9-10; $695) Introduction to DBS post-operative programming and emergent care for DBS patients

Additional information available at Call +1 724-588-1324 to register.

NORD Seeks Proposals

The NORD Research Grant Program provides seed-money grants to academic scientists for scientific and/or clinical research. The hope is that these studies will ultimately lead to new diagnostics, treatments, and/or cures for rare diseases. NORD’s program provides grants for the study of diseases for which there are few other sources of funding.

Grants provided through the NORD program are made possible by donations from individuals and organizations to restricted research funds at NORD.

All medical decisions guiding the NORD Research Grant Program are made by NORD’s Medical Advisory Committee.

For more information visit the website