[Congressional Record Volume 167, Number 158 (Tuesday, September 14, 2021)]
[Senate]
[Page S6482]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




   EXPRESSING SUPPORT FOR THE DESIGNATION OF SEPTEMBER 25, 2021, AS 
  ``NATIONAL ATAXIA AWARENESS DAY'', AND RAISING AWARENESS OF ATAXIA, 
               ATAXIA RESEARCH, AND THE SEARCH FOR A CURE

  Mr. SCHUMER. Mr. President, I ask unanimous consent that the 
Committee on Health, Education, Labor, and Pensions be discharged from 
further consideration and the Senate now proceed to S. Res. 339.
  The PRESIDING OFFICER. The clerk will report the resolution by title.
  The legislative clerk read as follows:

       A resolution (S. Res. 339) expressing support for the 
     designation of September 25, 2021, as ``National Ataxia 
     Awareness Day'', and raising awareness of ataxia, ataxia 
     research, and the search for a cure.

  There being no objection, the committee was discharged, and the 
Senate proceeded to consider the resolution.
  Mr. SCHUMER. I ask unanimous consent that the resolution be agreed; 
the Murphy amendment at the desk to the preamble be considered and 
agreed to; the preamble, as amended, be agreed to; and that the motions 
to reconsider be considered made and laid upon the table.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The resolution (S. Res. 339) was agreed to.
  The amendment (No. 3828) was agreed to as follows:

                    (Purpose: To amend the preamble)

       In the fifth whereas clause of the preamble, insert ``in 
     the United States'' after ``individuals''.
  The preamble, as amended, was agreed to.
  The resolution with its preamble, as amended, reads as follows:

                              S. Res. 339

       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 
     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, 
     2021, 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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