[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 424 Introduced in House (IH)]

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117th CONGRESS
  1st Session
H. RES. 424

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


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                    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

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                               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
    Resolved, 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.
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