Expressing Support for the Designation of March As ``Morquio A Syndrome Awareness Day''

Floor Speech

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Ms. MALLIOTAKIS. Mr. Speaker, I include in the Record the following proclamation:

Whereas: Morquio A syndrome, a classification of Mucopolysaccharidosis (MPS) disorders, is a rare, progressive genetic disorder that affects approximately 1 in every 300,000 births;

Whereas: individuals affected by Morquio A syndrome do not have or do not produce enough enzymes that break down sugar chains naturally in the body;

Whereas: the buildup of sugars negatively impacts the skeletal system and eventually the organ systems;

Whereas the condition of Morquio A syndrome worsens over time and there is no cure;

Whereas there is only one FDA-approved medication for Morquio A syndrome, a synthetic version of the enzyme that patients lack;

Whereas this treatment is a four-hour weekly infusion that helps slow the rapid progression of the disease;

Whereas patients receiving treatment for Morquio A syndrome often need to see numerous specialty doctors frequently and may also require many services for school-age children;

Whereas it is imperative that there be greater awareness of this serious health condition, and more must be done to increase activity at the local, state, and national levels;

Whereas ``Morquio A Syndrome Awareness Day'' is expected to be observed in the United States for years to come, providing hope and information for patients, caregivers, and families around the country: Now, therefore, be it

Resolved, That the House of Representatives--

Supports the designation of ``Morquio A Syndrome Awareness Day''; and

Recognizes the importance of, with respect to Morquio A syndrome--

Improving awareness;

Encouraging accurate and early diagnosis;

Advancing research;

Developing new treatments, diagnostics, and cures; and

Identifying regulatory pathways for drug development of ultrarare diseases like Morquio A syndrome.

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