S.Res. 507 – Reading Mode

III

118th CONGRESS

1st Session

S. RES. 507

IN THE SENATE OF THE UNITED STATES

December 14, 2023

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

RESOLUTION

Designating September 25, 2023, 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 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

That the Senate—

(1)

recognizes the need for greater public awareness of ataxia;

(2)

designates September 25, 2023, 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.