IV 
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 sus-
tained postural deformities; 
Whereas dystonia can affect many muscle groups simulta-
neously; 
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 
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•HCON 134 IH 
superficially address symptoms without curing the actual 
disease; 
Whereas individuals of all ages, genders, and ethnic back-
grounds are affected by dystonia; 
Whereas dystonia is the third most common movement dis-
order and affects many more people than better known 
disorders such as Huntington’s disease, muscular dys-
trophy, 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 alien-
ated from their communities and the workplace, causing 
such individuals to experience isolation and psychological 
distress and creating the need for greater public aware-
ness, understanding, and tolerance; 
Whereas additional research is needed to better understand 
the connection between the onset of dystonia and a trau-
matic 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 commu-
nities across the Nation about dystonia and the need for 
research funding, early detection methods, effective treat-
ments, and prevention programs: Now, therefore, be it 
Resolved by the House of Representatives (the Senate 
concurring), That it is the sense of Congress that— 
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•HCON 134 IH 
(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 Communica-
tion 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 edu-
cation with respect to dystonia through the co-
sponsorship of workshops and seminars with re-
spected patient organizations; 
(C) exploring collaborative opportunities 
for dystonia research at the John Edward Por-
ter Neuroscience Research Center at the Na-
tional 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; 
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•HCON 134 IH 
(2) funding should be increased for basic bio-
medical research for dystonia as well as other neuro-
logical disorders through the National Institutes of 
Health; 
(3) further research is needed to identify an ac-
curate diagnostic test for dystonia and an epidemio-
logical 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 part-
nerships between the Federal Government and pa-
tient advocacy organizations. 
Æ 
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