Expressing support for the designation of June 1, 2021, as "Batten Disease Awareness Day".

Bill: 117-hres-424
Sponsor: full_name: Rep. Garcia, Mike [R-CA-25]
Introduced: 2021-05-20
Policy area: Health
Subjects: Commemorative events and holidays

Congressional tributes

Health promotion and preventive care

Medical research

Neurological disorders
Latest action: action_date: 2021-05-21
text: Referred to the Subcommittee on Health.

Summaries:
action_date: 2021-05-20
action_desc: Introduced in House
text: <p>This resolution supports the designation of Batten Disease Awareness Day. Batten disease refers to a group of inherited nervous system disorders that interfere with the body's ability to break down certain molecules.</p>

tv_txt: IV 117th CONGRESS 1st Session H. RES. 424 IN THE HOUSE OF REPRESENTATIVES May 20, 2021 Mr. Garcia of California submitted the following resolution; which was referred to the Committee on Energy and Commerce RESOLUTION Expressing support for the designation of June 1, 2021, as Batten Disease Awareness Day .

Whereas Batten disease is a family of rare genetic disorders of the nervous system that typically begins in childhood; Whereas there are many forms of Batten disease, and the mutations of at least 14 different genes are known to cause the disease; Whereas symptoms of the fatal disease include vision loss leading to blindness, personality and behavioral changes, seizures, intellectual decline, disruption and loss of speech, dementia, and other debilitating ailments; Whereas depending on the age of onset, Batten disease usually leads to premature death when the patient is in his or her late teens or early twenties; Whereas Batten disease occurs in an estimated 2 to 4 of every 100,000 births in the United States; Whereas due to the many different forms of the disease, there is significant variability in the age of onset and symptom progression for each case; Whereas on average, the process to reach the correct diagnosis for a patient with a rare disease could take up to 7.6 years, visits with numerous physicians, and multiple misdiagnoses; Whereas there is no known cure for Batten disease, and the lack of essential funding has hindered scientists’ ability to find a potential treatment or cure; and Whereas the Federal Government has not done enough to provide funding for rare diseases, and 95 percent of the 7,000 rare diseases still have no FDA-approved treatment: Now, therefore, be it

That the House of Representatives— (1) supports the designation of a Batten Disease Awareness Day ; and (2) calls for more funding for research to be done on potential treatment and cures for rare diseases.