American Dystonia Society News

Barefoot Books Teams with American Dystonia Society to raise funds for dystonia research, awareness, and support.
31 October 2011

Jean, the Book Lady, has been an independent bookseller with Barefoot Books for over 7 years. Her business focuses on sharing books while giving back, so she offers 20% cash of all sales to schools or non-profit organizations. We are delighted to have Jean and Barefoot Books as part of our team. Click on the image above to start shopping. Thank you Jean and Barefoot Books!

Noel Valero, ADS Founder and CEO, authors a Dystonia Awareness article in the June/July issue of Neurology Today
01 June 2011

Noel ValeroADS Founder Noel Valero shares his awareness efforts and the difficulty with going public with his Dystonia disorder. His quest for raising awareness led to his being featured in a Dystonia segment on Mystery Diagnosis. To view his article, click here: Neurology Today June/July 2011 Issue. For a printable and downloadable copy of the article, please click here to get to our Acrobat file downloads. Click here if you missed the airing to view the segment.



Dawn Brinkley, Vickie Hutchinson, Kym Kell, Doug Smith, and Noel Valero Represents Dystonians at Dystonia Advocacy Days on Capitol Hill in Washington DC
10-11 May 2011

ADS Directors Dawn Brinkley, Kym Kell, and Noel Valero and fellow Dystonia advocates Vickie Hutchinson travelled to Washington DC and represented ADS during Dystonia Advocacy Days. Although ADS is not a member of the Dystonia Advocacy Network, ADS supports advocacy activities in Congress. While at Capitol Hill, our advocates met with a number of senators, representatives, and their staff to tell their personal stories as well as stories of Dystonians who could not make the trip. The group expressed their concerns for Dystonia research funding both by the NIH and DoD, Medicare coverage, and better access for Dystonia treatments. ADS is proud of its contingent and all of the fellow Dystonians who represented Dystonia at Dystonia Advocacy Days.

Dystonia Advocacy Days 2011
ADS Directors Dawn Brinkley, 4th from right, and Noel Valero, right, at Dystonia Advocacy Days 2011

Dystonia and DBS Featured on National TV
15 February 201

Dystonia Awareness got another boost when The Doctors and Montel Williams brought Alex John back to the spotlight after her DBS surgery. Alex's improvement was astounding but to quote her, "DBS is just a band-aid." Her dystonic head movements, although slight, were noticeable.

Raising Dystonia Awareness on National TV
04 February 2011

Dystonia was featured in a Mystery Diagnosis segment broadcast and rebroadcast on the Oprah Winfrey Network (OWN). ADS's founder Noel Valero, his wife, and one of his neurologists, Dr Roy Alcalay were featured as each brought the perspectives of patient, spouse, and caregiver in raising awareness about the struggles with Dystonia. Greater awareness is crucial to funding research for this difficult disorder that affects at least 300,000 Americans. The episode featured commentary by the patient, the patient's family, and the diagnosing neurologist. The commentary shows the struggles to receive a proper diagnosis and how all 3 parties work together to understand, cope, and help manage the disorder, offering insights for other patients and their families. Below is a 4 minute clip from the segment.



Ginny has struggled with Dystonia her entire life

Focus on Dystonia

2011 marks the 100 yrs since the 1st official Dystonia diagnosis

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