[Congressional Record (Bound Edition), Volume 159 (2013), Part 5]
[Extensions of Remarks]
[Pages 6552-6553]
[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

                         Wednesday, May 8, 2013

  Mr. MARCHANT. Mr. Speaker, I would like to recognize the National MPS 
Society for their 38 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, 
2013 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

[[Page 6553]]

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.

                          ____________________