116th CONGRESS 2d Session |
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.
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
November 12, 2020
Committee discharged; considered and agreed to
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,
(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.