III 116th CONGRESS 2d Session S. RES. 717 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 November 12, 2020 Committee discharged; considered and agreed to 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

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.