[Congressional Record (Bound Edition), Volume 151 (2005), Part 2]
[Senate]
[Page 2612]
[From the U.S. Government Publishing Office, www.gpo.gov]




      DESIGNATING FEBRUARY 25, 2005, AS NATIONAL MPS AWARENESS DAY

  Mr. FRIST. Mr. President, I ask unanimous consent that the Senate now 
proceed to the consideration of S. Res. 57, which was submitted earlier 
today.
  The PRESIDING OFFICER. The clerk will state the resolution by title.
  The legislative clerk read as follows:

       A resolution (S. Res. 57) designating February 25, 2005, as 
     National MPS Awareness Day.

  There being no objection, the Senate proceeded to consider the 
resolution.
  Mr. GRAHAM. Mr. President, I rise today to introduce a resolution 
recognizing February 25 as ``National MPS Day.'' This resolution enjoys 
strong bipartisan support in the Senate. I am also pleased that a 
similar resolution is being introduced this week in the House of 
Representatives.
  MPS, or Mucopolysaccharidosis, is a devastating disease that affects 
thousands of families in this country. Most often diagnosed in young 
children, MPS patients lack certain enzymes to break down complex 
carbohydrates in their bodies. These complex carbohydrates then are 
stored throughout the patient's body, causing many of the body's' 
systems to malfunction and, sadly, makes it difficult for these 
children to live long enough to reach adolescence.
  It is a parent's role to make sacrifices for their child; yet, for 
the parents of a child diagnosed with MPS, the sacrifices are 
exceptional. I have had the opportunity to meet with a number of 
parents of MPS children. These parents exhibit amazing hope, love, 
grace and humor that can often mask the many trials they undergo in 
caring for their children. My staff and I are constantly impressed at 
their ability to advance their cause while also selflessly caring for 
their children.
  The current president of the National MPS Society, Sissi Langford, is 
a South Carolinian. She and her husband have two children with MPS, Joe 
and Maggie. Sissi has been a passionate advocate for her children and 
all those who suffer from MPS. She has worked with my office for the 
past two years and has proved herself time and again to be 
knowledgeable, compassionate and committed to helping those who have 
been diagnosed with MPS. She worked with others in the National MPS 
Society to help include language in the latest reauthorization of the 
Individual with Disabilities Education Act (IDEA) to help address the 
needs of children who have been diagnosed with degenerative diseases. 
She has met with the National Institutes of Health and other top health 
policy makers to ensure that diseases in the same class as MPS are 
given adequate and necessary research attention. I commend Sissi and 
others like her, for their tireless work on behalf of MPS.
  It is my hope that this resolution will help advance the recognition 
of MPS, and therefore the attention given in the research realm. I am 
also hopeful that the Senate will pass this resolution marking February 
25 National MPS Day.
  Mr. FRIST. Mr. President, I ask unanimous consent that the resolution 
be agreed to, the preamble be agreed to, and the motion to reconsider 
be laid upon the table.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The resolution (S. Res. 57) was agreed to.
  The preamble was agreed to.
  The resolution, with its preamble, reads as follows:

                               S. Res. 57

       Whereas Mucopolysaccharidosis (``MPS'') and Mucolipidosis 
     (``ML'') disorders are genetically determined lysosomal 
     storage disorders that result in the body's inability to 
     produce certain enzymes needed to breakdown complex 
     carbohydrates;
       Whereas these complex carbohydrates are then stored in 
     virtually every cell in the body and progressively cause 
     damage to these cells, adversely affecting an individual's 
     body, including an individual's heart, respiratory system, 
     bones, internal organs, and central nervous system;
       Whereas the cellular damage caused by MPS often results in 
     mental retardation, 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;
       Whereas the nature of the disorder is usually not apparent 
     at birth;
       Whereas without treatment, life expectancy of an individual 
     afflicted with MPS is usually very early in life;
       Whereas recent research developments have resulted in 
     limited treatments for some MPS disorders;
       Whereas promising advancements are underway in pursuit of 
     treatments for additional MPS disorders;
       Whereas despite newly developed remedies, the blood brain 
     barrier continues to be a significant impediment to 
     effectively treating the brain, thereby preventing the 
     treatment of many of the symptoms of MPS;
       Whereas treatments for MPS will be greatly enhanced with 
     continued public funding;
       Whereas the quality of life for individuals afflicted with 
     MPS and the treatments available to them will be enhanced 
     through the development of early detection techniques and 
     early intervention;
       Whereas treatments and research advancements for MPS are 
     limited by a lack of awareness about MPS disorders;
       Whereas the lack of awareness about MPS disorders extends 
     to those within the medical community;
       Whereas the damage that is caused by MPS makes it a model 
     for many other degenerative genetic disorders;
       Whereas the development of effective therapies and a 
     potential cure for MPS disorders can be accomplished by 
     increased awareness, research, data collection, and 
     information distribution;
       Whereas the Senate is an institution than can raise public 
     awareness about MPS; and
       Whereas the Senate is also an institution that can assist 
     in encouraging and facilitating increased public and private 
     sector research for early diagnosis and treatments of MPS 
     disorders: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates February 25, 2005, as ``National MPS 
     Awareness Day''; and
       (2) supports the goals and ideals of ``National MPS 
     Awareness Day''.

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