IV 

118TH CONGRESS 

2D SESSION H. RES. 1307 

Expressing support for the designation of June 20, 2024, as ‘‘World FSHD 

Day’’. 

IN THE HOUSE OF REPRESENTATIVES 

JUNE 18, 2024 

Mrs. DINGELL (for herself and Mr. KELLY of Pennsylvania) submitted the following resolution; which was referred to the Committee on Energy and 

Commerce 

RESOLUTION 

Expressing support for the designation of June 20, 2024, 

as ‘‘World FSHD Day’’. 

Whereas facioscapulohumeral muscular dystrophy (FSHD) is 

a genetic neuromuscular disease (NMD) that leads to the 

weakening of skeletal muscles; 

Whereas FSHD’s name comes from the typical pattern of 

muscle weakness at onset, beginning with the face (facio), 

shoulder girdle (scapulo), and upper arms (humeral); 

Whereas FSHD Type 1 is the more common form of FSHD, 

accounting for approximately 95 percent of FSHD cases; 

results from deletions in the D4Z4 region on chromosome 

4; and leads to abnormal expression of the DUX4 gene; 


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•HRES 1307 IH 

Whereas, approximately 5 percent of FSHD cases, known as 

FSHD Type 2, are linked to mutations on a gene called 

SMCHD1, located on chromosome 18; 

Whereas there are still many FSHD cases of unknown genetic cause; 

Whereas FSHD is an inherited condition that can affect 

many family members across generations; 

Whereas FSHD is genetically transmissible in an autosomal 

dominant fashion, meaning that an affected parent has a 

50 percent chance of passing the genetic defect on to 

each child; 

Whereas 30 percent of new FSHD patients have no prior 

family history of the disease and are affected as a result 

of congenital spontaneous genetic mutation; 

Whereas FSHD exists worldwide, affects both sexes equally, 

and has no particular racial, geographic, or ethnic distribution; 

Whereas an estimated 1 in 8,000 individuals, or 41,487 

Americans, are living with FSHD; 

Whereas FSHD symptoms can develop at any age and can 

differ in the initial pattern of muscle weakness; 

Whereas weakness in abdominal muscles is common and can 

lead to lordosis, an exaggerated curve in the lower spine; 

Whereas the loss of upper body mobility is a debilitating 

symptom of FSHD that significantly impacts patients’ 

ability to perform daily tasks necessary to care for themselves; 

Whereas lower leg weakness often occurs and can lead to a 

condition called foot drop, where the foot stays down 

after pushing off when walking; 


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•HRES 1307 IH 

Whereas FSHD can reduce patients’ ability to work and earn 

a living; 

Whereas asymmetrical muscle loss is a hallmark symptom of 

FSHD with an unknown cause, and most patients observe that one arm, shoulder blade, or lower leg is weakened while the other remains stronger; 

Whereas about 20 percent of FSHD patients will become dependent on a wheelchair or scooter; 

Whereas patients with FSHD may develop progressive weakness of the respiratory muscles or scoliosis, which can 

cause fatal respiratory insufficiency; 

Whereas more than 70 percent of FSHD patients experience 

debilitating pain and fatigue, which can severely limit 

daily activities; 

Whereas the loss of facial expression and mobility, as well as 

others’ lack of understanding of FSHD, is emotionally 

distressing and can cause FSHD patients to withdraw 

socially; 

Whereas individuals with FSHD, like those with other rare 

disorders, experience challenges in obtaining a diagnosis, 

with the average time to receive an accurate FSHD diagnosis being 9 years; 

Whereas genetic testing is needed to definitively diagnose 

FSHD, and further investments in genetic testing are required to ensure access to testing for all Americans; 

Whereas, to date, the Food and Drug Administration (FDA) 

has yet to approve any treatments for FSHD; 

Whereas, as a result of the Orphan Drug Act, there have 

been important advances in research on and treatment 


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•HRES 1307 IH 

for rare diseases, including efforts to develop treatments 

for FSHD; 

Whereas Congress and the FDA have affirmed the importance of incorporating patient perspectives throughout 

the drug review process through implementation of the 

21st Century Cures Act, the HEART Act, and FDA 

guidance; 

Whereas the FDA’s Patient-Focused Drug Development program is a critical resource that allows patients and caregivers to educate the FDA and other stakeholders on 

their lived experiences; 

Whereas there is a critical need for research and development 

to advance treatments for FSHD; 

Whereas the FSHD Society, a nonprofit organization established in 1991, is dedicated to increasing, engaging, and 

empowering stakeholders and aggressively leveraging and 

expanding resources, with the goal of developing treatments for FSHD by 2025 and eventually a cure; 

Whereas, on June 29, 2020, the FSHD community held its 

first-ever externally led patient-focused drug development 

meeting; and 

Whereas FSHD patient advocacy organizations, research 

funding nonprofits, biopharmaceutical industry partners, 

and other key stakeholders sponsor World FSHD Day in 

the United States to increase public awareness and generate additional support for FSHD: Now, therefore, be it 

1 Resolved, That the House of Representatives— 

2 (1) supports the designation of ‘‘World FSHD 

3 Day’’; and 

4 (2) recognizes the importance of— 


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•HRES 1307 IH 

1 (A) improving awareness of and education 

2 about facioscapulohumeral muscular dystrophy 

3 (in this resolution referred to as ‘‘FSHD’’); 

4 (B) encouraging accurate and early diag5 nosis of FSHD through genetic screening; 

6 (C) supporting and funding future bio7 medical and scientific research to improve phys8 ical functioning and quality of life for individ9 uals living with FSHD; 

10 (D) developing new treatments, 

11 diagnostics, and cures for FSHD; and 

12 (E) advancing programs and policies that 

13 support individuals living with FSHD and their 

14 caregivers. 

Æ 


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