[Congressional Record Volume 168, Number 150 (Monday, September 19, 2022)]
[Senate]
[Pages S4824-S4825]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




    SENATE RESOLUTION 772--RECOGNIZING THE SERIOUSNESS OF MYOTONIC 
 DYSTROPHY AND EXPRESSING SUPPORT FOR THE DESIGNATION OF SEPTEMBER 15, 
      2022, AS ``INTERNATIONAL MYOTONIC DYSTROPHY AWARENESS DAY''

  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:

                              S. Res. 772

       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

[[Page S4825]]

     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.

                          ____________________