[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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