[Congressional Record Volume 170, Number 44 (Tuesday, March 12, 2024)]
[Extensions of Remarks]
[Page E244]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




EXPRESSING SUPPORT FOR THE DESIGNATION OF MARCH 15, 2024, AS ``MORQUIO 
                       A SYNDROME AWARENESS DAY''

                                 ______
                                 

                        HON. NICOLE MALLIOTAKIS

                              of new york

                    in the house of representatives

                        Tuesday, March 12, 2024

  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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