[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 794 Agreed to Senate (ATS)]

<DOC>






118th CONGRESS
  2d Session
S. RES. 794

 Designating September 25, 2024, 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

                             August 1, 2024

    Mrs. Hyde-Smith (for herself, Mr. Murphy, Mrs. Capito, and Ms. 
Stabenow) submitted the following resolution; which was referred to the 
                       Committee on the Judiciary

                           September 10, 2024

             Committee discharged; considered and agreed to

_______________________________________________________________________

                               RESOLUTION


 
 Designating September 25, 2024, 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 in the 
        United States 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 addiction or misuse, 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 can 
        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 many patients with ataxia require the use of assistive devices, such as 
        wheelchairs and walkers, to aid in their mobility, and many individuals 
        with ataxia may need physical and occupational therapy;
Whereas few treatments and no cures have been approved 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) designates September 25, 2024, 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) recognizes the individuals in the United States who 
        face challenges due to having 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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