[Congressional Record (Bound Edition), Volume 160 (2014), Part 6]
[Extensions of Remarks]
[Page 7689]
[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

                         Thursday, May 8, 2014

  Mr. MARCHANT. Mr. Speaker, I would like to recognize the National MPS 
Society for their 40 years of supporting families while searching for 
cures for this genetic disease. 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 towards combating MPS has resulted in the 
development of limited treatments for some of the MPS diseases.
  I ask my colleagues and their staff to join me in recognizing May 15, 
2014 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 
and their many volunteers for an 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. More must be done 
to find cures and effective treatments, but let us reflect on the 
importance of this day. I ask that all of my colleagues join me in 
commemorating National MPS Awareness Day.

                          ____________________