SENATE RESOLUTION 717--EXPRESSING SUPPORT FOR THE DESIGNATION OF SEPTEMBER 25, 2020, AS ``NATIONAL ATAXIA AWARENESS DAY'', AND RAISING AWARENESS OF ATAXIA, ATAXIA RESEARCH, AND THE SEARCH FOR A CURE; Congressional Record Vol. 166, No. 166
(Senate - September 24, 2020)
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[Page S5876]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SENATE RESOLUTION 717--EXPRESSING SUPPORT FOR THE DESIGNATION OF
SEPTEMBER 25, 2020, AS ``NATIONAL ATAXIA AWARENESS DAY'', AND RAISING
AWARENESS OF ATAXIA, ATAXIA RESEARCH, AND THE SEARCH FOR A CURE
Ms. WARREN (for herself and Mrs. Hyde-Smith) submitted the following
resolution; which was referred to the Committee on Health, Education,
Labor, and Pensions:
S. Res. 717
Whereas ataxia is a clinical manifestation indicating
degeneration or dysfunction of the brain that negatively
affects the coordination, precision, and accurate timing of
physical movements;
Whereas ataxia can strike individuals of all ages,
including children;
Whereas the term ``ataxia'' is used to classify a group of
rare, inherited neurodegenerative diseases including--
(1) ataxia telangiectasia;
(2) episodic ataxia;
(3) Friedreich's ataxia; and
(4) spinocerebellar ataxia;
Whereas there are many known types of genetic ataxia, but
the genetic basis for ataxia in some patients is still
unknown;
Whereas all inherited ataxias affect fewer than 200,000
individuals and, therefore, are recognized as rare diseases
under the Orphan Drug Act (Public Law 97-414; 96 Stat. 2049);
Whereas some genetic ataxias are inherited in an autosomal
dominant manner, while others are inherited in an autosomal
recessive manner;
Whereas ataxia symptoms can also be caused by noninherited
health conditions and other factors, including stroke, tumor,
cerebral palsy, head trauma, multiple sclerosis, alcohol
abuse, and certain medications;
Whereas ataxia can present physical, psychological, and
financial challenges for patients and their families;
Whereas symptoms and outcomes of ataxia progress at
different rates and include--
(1) lack of coordination;
(2) slurred speech;
(3) cardiomyopathy;
(4) scoliosis;
(5) eye movement abnormalities;
(6) difficulty walking;
(7) tremors;
(8) trouble eating and swallowing;
(9) difficulties with other activities that require fine
motor skills; and
(10) death;
Whereas most patients with ataxia require the use of
assistive devices, such as wheelchairs and walkers, to aid in
their mobility, and many individuals may need physical and
occupational therapy;
Whereas there is no treatment or cure approved by the Food
and Drug Administration for ataxia; and
Whereas clinical research to develop safe and effective
treatments for ataxia is ongoing: Now, therefore, be it
Resolved, That the Senate--
(1) recognizes the need for greater public awareness of
ataxia;
(2) expresses support for the designation of September 25,
2020, as ``National Ataxia Awareness Day'';
(3) supports the goals of National Ataxia Awareness Day,
which are--
(A) to raise awareness of the causes and symptoms of ataxia
among the general public and health care professionals;
(B) to improve diagnosis of ataxia and access to care for
patients affected by ataxia; and
(C) to accelerate ataxia research, including on safe and
effective treatment options and, ultimately, a cure;
(4) acknowledges the challenges facing individuals in the
United States who have ataxia and the families of those
individuals; and
(5) encourages States, territories, and localities to
support the goals of National Ataxia Awareness Day.
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