[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1307 Introduced in House (IH)]

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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;
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;
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 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
    Resolved, That the House of Representatives--
            (1) supports the designation of ``World FSHD Day''; and
            (2) recognizes the importance of--
                    (A) improving awareness of and education about 
                facioscapulohumeral muscular dystrophy (in this 
                resolution referred to as ``FSHD'');
                    (B) encouraging accurate and early diagnosis of 
                FSHD through genetic screening;
                    (C) supporting and funding future biomedical and 
                scientific research to improve physical functioning and 
                quality of life for individuals 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.
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