[Congressional Record Volume 167, Number 139 (Wednesday, August 4, 2021)]
[Senate]
[Pages S5835-S5836]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         SUBMITTED RESOLUTIONS

                                 ______
                                 

       SENATE RESOLUTION 336--DESIGNATING SEPTEMBER 15, 2021, AS 
 ``INTERNATIONAL MYOTONIC DYSTROPHY AWARENESS DAY'' AND SUPPORTING THE 
   GOALS AND IDEALS OF INTERNATIONAL MYOTONIC DYSTROPHY AWARENESS DAY

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

                              S. Res. 336

       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,

[[Page S5836]]

     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.
  Mr. KAINE. Mr. President, myotonic dystrophy is a rare, multi-
systemic, progressive, inherited disease that affects successive family 
generations but is often misdiagnosed. Affecting as many as 1 in 2,100 
individuals, myotonic dystrophy is the most common form of adult 
muscular dystrophy. However, there is currently no cure and there are 
no Food and Drug Administration (FDA) approved treatments.
  Today, I am pleased to introduce the first ever U.S. Senate 
resolution designating September 15th as International Myotonic 
Dystrophy Awareness Day. The resolution will help to highlight the 
devastating generational impact of this disease, focus global attention 
on accelerating drug discovery, and work to advance healthcare for our 
community.
  Caused by an inherited genetic anomaly, individuals with myotonic 
dystrophy experience varied and complex symptoms, from locked muscles, 
to heart, breathing, digestive, hormonal, and cognitive difficulties. 
It is not uncommon for older family members to only be tested following 
the birth of an affected child, and despite the availability of simple 
genetic tests, misdiagnoses can persist for decades.
  The different body systems affected, the severity of symptoms, and 
the age of onset of those symptoms varies greatly between individuals, 
even within the same family. Many of these individuals live with 
debilitating symptoms yet in the majority of situations, they never 
receive adequate or proactive medical care which could dramatically 
improve their quality of life.
  More research is desperately needed to change this reality. Virginia-
based researchers are among the global leaders working to better 
understand myotonic dystrophy and discover new treatments and a cure. 
Much of this work is being led by researchers at Virginia Commonwealth 
University (VCU) and supported by Virginia advocates.
  The Resolution calls for 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; fostering biopharmaceutical innovation that will lead to 
treatments approved by the FDA and eventually a cure for myotonic 
dystrophy; advancing programs and policies that assist individuals with 
disabilities caused by myotonic dystrophy and the caregivers of those 
individuals; and encouraging awareness and education of myotonic 
dystrophy among patients, caregivers, clinicians, and researchers.
  I urge my colleagues on both sides of the aisle to see the Resolution 
designating September 15th as International Myotonic Dystrophy 
Awareness Day as an opportunity to raise awareness for this devastating 
disease and to promote and advance the health, well-being, and inherent 
dignity of all children and adults with myotonic dystrophy. I ask for 
their support.

                          ____________________