Title: A resolution recognizing the seriousness of myotonic dystrophy and expressing support for the designation of September 15, 2022, as "International Myotonic Dystrophy Awareness Day".
Policy area: Health

Summary:
This resolution designates September 15, 2022, as International Myotonic Dystrophy Awareness Day. Myotonic dystrophy is an inherited disorder characterized by progressive muscle loss and weakness.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 772 Introduced in Senate (IS)]

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117th CONGRESS
  2d Session
S. RES. 772

   Recognizing the seriousness of myotonic dystrophy and expressing 
 support for the designation of September 15, 2022, as ``International 
                  Myotonic Dystrophy Awareness Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           September 19, 2022

   Mr. Kaine (for himself, Ms. Lummis, Ms. Klobuchar, and Ms. Smith) 
submitted the following resolution; which was referred to the Committee 
               on Health, Education, Labor, and Pensions

_______________________________________________________________________

                               RESOLUTION


 
   Recognizing the seriousness of myotonic dystrophy and expressing 
 support for the designation of September 15, 2022, as ``International 
                  Myotonic Dystrophy Awareness Day''.

Whereas myotonic dystrophy is a rare, multi-systemic, inherited disease that 
        affects approximately 1 in 2,100 individuals and more than 150,000 
        individuals in the United States;
Whereas 1 in 8,000 individuals are living with myotonic dystrophy globally, yet 
        thousands of individuals do not know they have the disease and are in 
        need of care;
Whereas myotonic dystrophy is the most common form of adult-onset muscular 
        dystrophy, and the symptoms of the disease become more severe with each 
        generation;
Whereas the disease is caused by a mutation in the DMPK gene, resulting in 
        myotonic dystrophy type 1, or the CNBP gene, resulting in myotonic 
        dystrophy type 2;
Whereas those mutations prevent those genes from functioning properly, impacting 
        multiple body systems;
Whereas those mutations are autosomal dominant mutations, in which one 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, ranging from skeletal 
        muscle problems, early cataracts, and excessive daytime sleepiness to 
        heart, breathing, digestive, hormonal, speech, swallowing, diabetic, 
        immune, vision, and cognitive difficulties;
Whereas myotonic dystrophy is a highly variable and complicated disorder, and 
        the younger an individual is when symptoms first appear, the more severe 
        symptoms are likely to be;
Whereas misdiagnoses have persisted for decades, and delays in diagnosing 
        myotonic dystrophy are common;
Whereas there are currently no treatments approved by the Food and Drug 
        Administration for myotonic dystrophy;
Whereas the Myotonic Dystrophy Foundation was founded in 2007 with a mission to 
        enhance the quality of life of individuals living with myotonic 
        dystrophy and accelerate research focused on finding treatments and a 
        cure;
Whereas, in 2014, Congress enacted the Paul D. Wellstone Muscular Dystrophy 
        Community Assistance, Research and Education Amendments of 2014 (Public 
        Law 113-166; 128 Stat. 1879), which advanced muscular dystrophy research 
        and public health surveillance activities, including for myotonic 
        dystrophy;
Whereas, in September 2017, recognizing the seriousness of the disease 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 Allowance Program, 
        which 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; and
Whereas a more robust scientific investment in 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) expresses support for the designation of September 15, 
        2022, as ``International Myotonic Dystrophy Awareness Day'';
            (2) recognizes the seriousness of myotonic dystrophy; and
            (3) supports the goals and ideals of International Myotonic 
        Dystrophy Awareness Day, which include--
                    (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;
                    (C) fostering biopharmaceutical innovation that 
                will lead to Food and Drug Administration-approved 
                treatments and eventually a cure for myotonic 
                dystrophy;
                    (D) advancing programs and policies that assist 
                individuals living with myotonic dystrophy and the 
                caregivers of such individuals; and
                    (E) encouraging awareness and education of myotonic 
                dystrophy for patients, caregivers, clinicians, and 
                researchers.
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