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[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H. Con. Res. 134 Introduced in House (IH)]

111th CONGRESS
  1st Session
H. CON. RES. 134

 Expressing the sense of Congress regarding the need for further study 
                 of the neurological disorder dystonia.

_______________________________________________________________________

                    IN THE HOUSE OF REPRESENTATIVES

                              May 21, 2009

 Mr. Davis of Illinois submitted the following concurrent resolution; 
       which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                         CONCURRENT RESOLUTION

 
 Expressing the sense of Congress regarding the need for further study 
                 of the neurological disorder dystonia.

Whereas dystonia is a neurological disorder characterized by powerful and 
        painful involuntary muscle spasms that cause twisting, repetitive muscle 
        movements, and sustained postural deformities;
Whereas dystonia can affect many muscle groups simultaneously;
Whereas several forms of dystonia are genetically inherited, while other forms 
        are considered secondary dystonia due to birth injury, physical trauma, 
        exposure to certain medications, surgery, or stroke;
Whereas there is no known cure for dystonia and though treatments are available, 
        current medical therapies only superficially address symptoms without 
        curing the actual disease;
Whereas individuals of all ages, genders, and ethnic backgrounds are affected by 
        dystonia;
Whereas dystonia is the third most common movement disorder and affects many 
        more people than better known disorders such as Huntington's disease, 
        muscular dystrophy, and Lou Gehrig's disease (amyotrophic lateral 
        sclerosis);
Whereas dystonia affects an estimated 300,000 people in North America;
Whereas many individuals who suffer from dystonia are alienated from their 
        communities and the workplace, causing such individuals to experience 
        isolation and psychological distress and creating the need for greater 
        public awareness, understanding, and tolerance;
Whereas additional research is needed to better understand the connection 
        between the onset of dystonia and a traumatic brain injury due to the 
        increasing prevalence of dystonia amongst combat veterans; and
Whereas the Dystonia Advocacy Coalition has requested that the Congress 
        designate the first week in June as Dystonia Awareness Week in order to 
        educate communities across the Nation about dystonia and the need for 
        research funding, early detection methods, effective treatments, and 
        prevention programs: Now, therefore, be it
    Resolved by the House of Representatives (the Senate concurring), 
That it is the sense of Congress that--
            (1) the Director of the National Institutes of Health (NIH) 
        shall take a leadership role in the fight against dystonia by--
                    (A) continuing the current collaboration between 
                the National Institute of Neurological Disorders and 
                Stroke (NINDS), the National Institute on Deafness and 
                Other Communication Disorders (NIDCD), and the National 
                Eye Institute with respect to dystonia;
                    (B) encouraging NINDS and NIDCD to provide the 
                necessary funding for intramural and extramural 
                biomedical research and education with respect to 
                dystonia through the cosponsorship of workshops and 
                seminars with respected patient organizations;
                    (C) exploring collaborative opportunities for 
                dystonia research at the John Edward Porter 
                Neuroscience Research Center at the National Institutes 
                of Health and pursuing more aggressive programs in 
                dystonia research using the multidisciplinary approach 
                of the Center; and
                    (D) exploring collaborative opportunities to expand 
                the dystonia research portfolio through the Office of 
                Rare Diseases;
            (2) funding should be increased for basic biomedical 
        research for dystonia as well as other neurological disorders 
        through the National Institutes of Health;
            (3) further research is needed to identify an accurate 
        diagnostic test for dystonia and an epidemiological study 
        should be conducted to determine the frequency of the disease 
        in the population;
            (4) patient access to safe and effective dystonia therapies 
        such as botulinum toxin injections should be improved; and
            (5) public awareness and professional education regarding 
        dystonia needs to increase through partnerships between the 
        Federal Government and patient advocacy organizations.
                                 <all>
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