[Congressional Record (Bound Edition), Volume 157 (2011), Part 5]
[Extensions of Remarks]
[Page 6546]
[From the U.S. Government Publishing Office, www.gpo.gov]




                 RECOGNIZING NATIONAL MPS AWARENESS DAY

                                 ______
                                 

                          HON. KENNY MARCHANT

                                of texas

                    in the house of representatives

                          Tuesday, May 3, 2011

  Mr. MARCHANT. Mr. Speaker, I would like to recognize the National MPS 
Society for their 36 years of supporting families while searching for 
cures. Mucopolysaccharidosis or MPS is a group of genetically 
determined lysosomal storage diseases that render the human body 
incapable of producing certain enzymes needed to break down complex 
carbohydrates. The damage caused by MPS on a cellular level adversely 
affects the body and damages the heart, respiratory system, bones, 
internal organs, and central nervous system. MPS often results in 
intellectual disabilities, short stature, corneal damage, joint 
stiffness, loss of mobility, speech and hearing impairment, heart 
disease, hyperactivity, chronic respiratory problems, and, most 
importantly, a drastically shortened life span.
  Symptoms of MPS are usually not apparent at birth and without 
treatment; the life expectancy of an individual affected begins to 
decrease at a very early stage in their life. Research has resulted in 
the development of limited treatments for some of the MPS diseases.
  I urge my colleagues and their staff to join me in recognizing May 
15, 2011 as National MPS Awareness Day. This is an important time 
during which the MPS disease community will help increase the awareness 
of this devastating disease, as well as supporting research to improve 
treatments, find cures and receive early diagnosis. The MPS families 
are encouraged to reflect and support each other and to reach out to 
those families who have lost loved ones to MPS. By wearing their purple 
ribbons and sharing these ribbons within their community, they are 
increasing public awareness about this disease. This date is also the 
start of the national MPS Run/Walk season along with other local 
community activities to raise awareness along with money for research 
and for family assistance programs.
  I commend the National MPS Society for their unwavering commitment to 
bring about awareness of this disease and to continue to advocate for 
federal legislation to streamline the regulatory processes and to speed 
effective treatments and cures for their loved ones while advocating 
for funding of respite and enhancing special education. More must be 
done to find cures and effective treatments.

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