[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 717 Introduced in Senate (IS)]

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116th CONGRESS
  2d Session
S. RES. 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.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           September 24, 2020

 Ms. Warren (for herself and Mrs. Hyde-Smith) submitted the following 
 resolution; which was referred to the Committee on Health, Education, 
                          Labor, and Pensions

_______________________________________________________________________

                               RESOLUTION


 
   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.

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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