III 

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; 


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•SRES 772 IS 

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; 


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•SRES 772 IS 

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 

1 Resolved, That the Senate— 

2 (1) expresses support for the designation of 

3 September 15, 2022, as ‘‘International Myotonic 

4 Dystrophy Awareness Day’’; 


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•SRES 772 IS 

1 (2) recognizes the seriousness of myotonic dys2 trophy; and 

3 (3) supports the goals and ideals of Inter4 national Myotonic Dystrophy Awareness Day, which 

5 include— 

6 (A) committing to promoting and advanc7 ing the health, well-being, and inherent dignity 

8 of all children and adults with myotonic dys9 trophy; 

10 (B) supporting the advancement of sci11 entific and medical myotonic dystrophy re12 search; 

13 (C) fostering biopharmaceutical innovation 

14 that will lead to Food and Drug Administra15 tion-approved treatments and eventually a cure 

16 for myotonic dystrophy; 

17 (D) advancing programs and policies that 

18 assist individuals living with myotonic dys19 trophy and the caregivers of such individuals; 

20 and 

21 (E) encouraging awareness and education 

22 of myotonic dystrophy for patients, caregivers, 

23 clinicians, and researchers. 

Æ 


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