[Congressional Record Volume 166, Number 166 (Thursday, September 24, 2020)]
[Senate]
[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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