III 

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; 


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•SRES 336 IS 

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 


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•SRES 336 IS 

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 


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1 Resolved, That the Senate— 

2 (1) designates September 15, 2021, as ‘‘Inter3 national Myotonic Dystrophy Awareness Day’’; and 

4 (2) supports the goals and ideals of Inter5 national Myotonic Dystrophy Awareness Day, in6 cluding— 

7 (A) committing to promoting and advanc8 ing the health, well-being, and inherent dignity 

9 of all children and adults with myotonic dys10 trophy; 

11 (B) supporting the advancement of sci12 entific and medical myotonic dystrophy research 

13 at the National Institutes of Health and as part 

14 of the Peer Reviewed Medical Research Pro15 gram of the Department of Defense; 

16 (C) fostering biopharmaceutical innovation 

17 that will lead to treatments approved by the 

18 Food and Drug Administration and eventually 

19 a cure for myotonic dystrophy; 

20 (D) advancing programs and policies that 

21 assist individuals disabled by myotonic dys22 trophy and the caregivers of those individuals; 

23 and 


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•SRES 336 IS 

1 (E) encouraging awareness and education 

2 of myotonic dystrophy among patients, care3 givers, clinicians, and researchers. 

Æ 


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