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 fol-
lowing 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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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 ge-
netic 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 dis-
tribution; 
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 them-
selves; 
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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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 ob-
serve that one arm, shoulder blade, or lower leg is weak-
ened while the other remains stronger; 
Whereas about 20 percent of FSHD patients will become de-
pendent on a wheelchair or scooter; 
Whereas patients with FSHD may develop progressive weak-
ness 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 diag-
nosis being 9 years; 
Whereas genetic testing is needed to definitively diagnose 
FSHD, and further investments in genetic testing are re-
quired 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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for rare diseases, including efforts to develop treatments 
for FSHD; 
Whereas Congress and the FDA have affirmed the impor-
tance 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 pro-
gram is a critical resource that allows patients and care-
givers 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 estab-
lished in 1991, is dedicated to increasing, engaging, and 
empowering stakeholders and aggressively leveraging and 
expanding resources, with the goal of developing treat-
ments 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 gen-
erate additional support for FSHD: Now, therefore, be it 
Resolved, That the House of Representatives— 
(1) supports the designation of ‘‘World FSHD 
Day’’; and 
(2) recognizes the importance of— 
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(A) improving awareness of and education 
about facioscapulohumeral muscular dystrophy 
(in this resolution referred to as ‘‘FSHD’’); 
(B) encouraging accurate and early diag-
nosis of FSHD through genetic screening; 
(C) supporting and funding future bio-
medical and scientific research to improve phys-
ical functioning and quality of life for individ-
uals living with FSHD; 
(D) 
developing 
new 
treatments, 
diagnostics, and cures for FSHD; and 
(E) advancing programs and policies that 
support individuals living with FSHD and their 
caregivers. 
Æ 
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