[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 336 Introduced in Senate (IS)]

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117th CONGRESS
  1st Session
S. RES. 336

 Designating September 15, 2021, as ``International Myotonic Dystrophy 
 Awareness Day'' and supporting the goals and ideals of International 
                   Myotonic Dystrophy Awareness Day.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             August 4, 2021

   Mr. Kaine (for himself and Ms. Klobuchar) submitted the following 
    resolution; which was referred to the Committee on the Judiciary

_______________________________________________________________________

                               RESOLUTION


 
 Designating September 15, 2021, as ``International Myotonic Dystrophy 
 Awareness Day'' and supporting the goals and ideals of International 
                   Myotonic Dystrophy Awareness Day.

Whereas myotonic dystrophy is a rare, multi-systemic, inherited disease that 
        affects approximately 1 in 2,100 people and a total of 150,000 
        individuals in the United States;
Whereas there are well over 1,000,000 people living with myotonic dystrophy 
        globally, yet thousands of people do not know they have the disease and 
        are in need of care;
Whereas myotonic dystrophy is the most common form of adult muscular dystrophy 
        and the symptoms of myotonic dystrophy become more severe with each 
        generation;
Whereas the disease is caused by mutations in the DMPK gene and the CNBP gene, 
        resulting in myotonic dystrophy type 1 and myotonic dystrophy type 2, 
        respectively;
Whereas those mutations prevent the DMPK gene and the CNBP gene from functioning 
        properly, impacting multiple body systems;
Whereas the genetic mutations are autosomal dominant mutations, where a single 
        copy of the altered gene is sufficient to cause the disorder, and 
        affected individuals have a 50 percent chance of passing on the mutated 
        gene to their children;
Whereas, through this inherited genetic anomaly, individuals with myotonic 
        dystrophy experience varied and complex symptoms, including skeletal 
        muscle problems, excessive daytime sleepiness, early cataracts and 
        heart, breathing, digestive, hormonal, speech, swallowing, diabetic, 
        immune, vision, and cognitive difficulties;
Whereas myotonic dystrophy is a highly variable and complicated disorder in 
        which the younger an individual is when symptoms first appear, the more 
        severe symptoms are likely to be, with progressively more severe 
        symptoms occurring after the earlier symptoms are experienced;
Whereas misdiagnoses of myotonic dystrophy have persisted for decades, and 
        delays in diagnosing myotonic dystrophy are common;
Whereas there are currently no treatments for myotonic dystrophy approved by the 
        Food and Drug Administration;
Whereas, in 2007, the Myotonic Dystrophy Foundation was founded with a mission 
        to enhance the quality of life of people living with myotonic dystrophy 
        and to accelerate research focused on finding treatments and a cure;
Whereas, in 2014, Congress reauthorized the Paul D. Wellstone Muscular Dystrophy 
        Community Assistance, Research, and Education Amendments of 2014 (Public 
        Law 113-166; 42 U.S.C. 201), which increased muscular dystrophy research 
        funding and public health surveillance activities, including for 
        myotonic dystrophy;
Whereas, in September 2017, recognizing the seriousness of myotonic dystrophy 
        and the especially disabling impact of myotonic dystrophy on individuals 
        with congenital myotonic dystrophy, the Social Security Administration 
        added congenital myotonic dystrophy to the Compassionate Allowances 
        program that allows individuals to quickly qualify for disability 
        benefits, including health insurance coverage;
Whereas, in 2018, Congress added myotonic dystrophy to the list of eligible 
        conditions for research funding under the Peer Reviewed Medical Research 
        Program of the Department of Defense, which resulted in more than 
        $6,000,000 in new research awards;
Whereas funding for myotonic dystrophy research supported by the National 
        Institutes of Health remained flat between 2010 and 2020 with the agency 
        awarding $24,000,000 in research grants in fiscal year 2020; and
Whereas increased Federal funding for myotonic dystrophy research will improve 
        health outcomes, reduce disability, and increase life expectancy for 
        individuals living with myotonic dystrophy and holds great promise for 
        helping individuals with similar genetic diseases: Now, therefore, be it
    Resolved, That the Senate--
            (1) designates September 15, 2021, as ``International 
        Myotonic Dystrophy Awareness Day''; and
            (2) supports the goals and ideals of International Myotonic 
        Dystrophy Awareness Day, including--
                    (A) committing to promoting and advancing the 
                health, well-being, and inherent dignity of all 
                children and adults with myotonic dystrophy;
                    (B) supporting the advancement of scientific and 
                medical myotonic dystrophy research at the National 
                Institutes of Health and as part of the Peer Reviewed 
                Medical Research Program of the Department of Defense;
                    (C) fostering biopharmaceutical innovation that 
                will lead to treatments approved by the Food and Drug 
                Administration and eventually a cure for myotonic 
                dystrophy;
                    (D) advancing programs and policies that assist 
                individuals disabled by myotonic dystrophy and the 
                caregivers of those individuals; and
                    (E) encouraging awareness and education of myotonic 
                dystrophy among patients, caregivers, clinicians, and 
                researchers.
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