[Congressional Record (Bound Edition), Volume 152 (2006), Part 3]
[House]
[Pages 4125-4127]
[From the U.S. Government Publishing Office, www.gpo.gov]




        SUPPORTING THE GOALS AND IDEALS OF ``NATIONAL MPS DAY''

  Mr. DENT. Mr. Speaker, I move to suspend the rules and agree to the 
resolution (H. Res. 85) supporting the goals and ideals of ``National 
MPS Day''.
  The Clerk read as follows:

                               H. Res. 85

       Whereas mucopolysaccharidoses and mucolipidoses (commonly 
     known as ``MPS disorders'') are genetically determined 
     lysosomal storage disorders that result in the inability of 
     the body to produce certain enzymes needed to break down 
     complex carbohydrates;
       Whereas in individuals with MPS disorders, complex 
     carbohydrates are stored in virtually every cell in the body 
     and progressively cause damage to the cells, affecting 
     multiple systems, including the bones, heart and other 
     internal organs, respiratory system, and central nervous 
     system;
       Whereas the cellular damage caused by MPS disorders 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, drastically shortened life span;
       Whereas the nature of MPS disorders is usually not apparent 
     at birth, and, without treatment, life expectancy is usually 
     very short;
       Whereas the multisystemic damage that is caused by MPS 
     disorders makes the disorders ideal models for many other 
     degenerative genetic disorders;
       Whereas recent research developments have resulted in 
     limited treatments for some

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     MPS disorders, and promising advancements are underway in 
     pursuit of treatments for additional MPS disorders;
       Whereas treatments and research advancements for MPS 
     disorders are limited by lack of awareness about the 
     disorders, even within the medical community;
       Whereas the development of early detection and intervention 
     techniques, effective treatments, and a potential cure for 
     MPS disorders can be accomplished by research, data 
     collection, and information distribution;
       Whereas increased public and professional awareness and 
     continued public funding will assist in the development of 
     new techniques, treatments, and cures for MPS disorders, 
     which will greatly enhance the quality of life for 
     individuals with MPS disorders;
       Whereas the National MPS Society, Inc., a group ultimately 
     dedicated to finding a cure for MPS disorders, has designated 
     February 25 of each year as ``National MPS Day''; and
       Whereas the designation of ``National MPS Day'' provides an 
     opportunity to increase public and professional awareness 
     about mucopolysaccharidoses and mucolipidoses, and to 
     encourage research for early diagnosis, effective treatments, 
     and a potential cure for MPS disorders: Now, therefore, be it
       Resolved, That the House of Representatives supports the 
     goals and ideals of ``National MPS Day''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Pennsylvania (Mr. Dent) and the gentleman from Illinois (Mr. Davis) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Pennsylvania.


                             General Leave

  Mr. DENT. Mr. Speaker, I ask unanimous consent that all Members may 
have 5 legislative days within which to revise and extend their remarks 
and include extraneous material on the resolution under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Pennsylvania?
  There was no objection.
  Mr. DENT. Mr. Speaker, I yield myself such time as I may consume, and 
I rise today in support of House Resolution 85, introduced by the 
distinguished gentleman from Wisconsin (Mr. Kind).
  This resolution would support the goals and ideals of ``National MPS 
Day.'' MPS and related diseases are rare genetic diseases that cause 
cells to form improperly, wreaking havoc among all the body's systems. 
Enzymes which normally break apart damaged cells fail to produce, 
resulting in progressive damage throughout the body, affecting the 
heart, bones, joints, respiratory system and the central nervous 
system. It can cause stunted growth, stiff joints, speech and hearing 
impairment, breathing problems, mental retardation, and a dramatically 
shortened life span.
  All the symptoms of these diseases are not always apparent at birth. 
They develop slowly as damaged cells accumulate, many times resulting 
in death before the teenage years. Currently, there are no cures for 
these dangerous diseases.
  I was unaware of MPS until Les Sheaffer, one of my constituents, came 
to talk to me about his daughter Brittany, who has MPS III, or 
Sanfilippo Syndrome. My staff and I were touched by Brittany's story 
and the Sheaffer family's resolve. Brittany's condition underscores the 
difficulties facing families coping with these dreaded diseases.
  The occurrence of MPS in the general population is thought to be 
about 1 in 25,000 births. Increased public and professional awareness 
are important to further the development of treatments and techniques 
to help cope with and eventually cure these diseases. Because MPS 
diseases are not commonly known and well understood in the medical 
community, diagnosis is often delayed. Early detection and intervention 
can help to improve the quality of life for children like Brittany.
  I applaud the efforts of the National MPS Society to support 
research, to support families, and to increase public and professional 
awareness of these diseases. This legislation would build on the 
National MPS Society's work by raising awareness of these devastating 
diseases and increasing support for the disease's victims and their 
families. For this reason, I ask all Members to join me and Mr. Kind in 
passing House Resolution 85.
  Mr. Speaker, I reserve the balance of my time.

                              {time}  1500

  Mr. DAVIS of Illinois. Mr. Speaker, I yield myself such time as I may 
consume.
  Mr. Speaker, I rise today in recognition of National MPS Day. MPS 
disorders affect primarily children and reduce their ability to produce 
certain enzymes that clear the body of toxins. The resulting effect of 
this enzyme deficiency manifests itself in a number of ways: mental 
retardation, physical malformations, small stature, corneal damage, 
chronic physical pain, and a shortened and difficult life span. This 
disease affects our Nation's children and has a dramatic ripple effect 
that impacts all who know and love them.
  MPS disorders are hereditary and there is no cure, but significant 
advancements have been made or are on the horizon. This is just one 
reason why MPS Day is so important. We must keep the public informed 
about the disease and in searching for a cure.
  This resolution will help bring the struggles of those affected by 
MPS disorders into the public arena and will signify that we hope to do 
everything within our power to fight it.
  MPS Day was commemorated on February 25 of this year, but it is a 
daily struggle for those affected with the disease. If MPS affects one 
family, it affects too many; and we should continue to raise awareness 
and do all we can to help the families and the victims of MPS. 
Therefore, Mr. Speaker, I rise in strong support of H. Res. 85.
  Mr. Speaker, I yield the balance of my time to the gentleman from 
Wisconsin (Mr. Kind).
  Mr. KIND. Mr. Speaker, I thank the gentleman from Illinois for 
yielding me this time.
  Mr. Speaker, I rise in favor of H. Res. 85, supporting the goals and 
ideals of National MPS Day. MPS and ML, or mucopolysaccharidoses and 
mucolipidoses, are genetic disorders caused by the body's inability to 
produce specific enzymes. Most individuals suffering from this disease 
are children; and they endure a variety of ailments, including problems 
with the bones, heart, joints, and the respiratory system. Most 
devastatingly, they have drastically shortened life spans.
  Because of a lack of information and understanding about these 
disorders, even among the medical community, children often receive 
delayed or wrong diagnosis. For this reason, it is of the utmost 
importance that we increase research and work for a cure. At the same 
time, we must increase awareness of these disorders that affect so many 
families. February 25 of every year is National MPS Day, and I believe 
we in the House of Representatives could do a great service to the MPS 
community by passing this resolution to honor this day and their work.
  I am very pleased the Senate passed such a resolution, and I extend 
my thanks to my colleague and friend, Mr. Dent, as well as Mr. Davis, 
along with the 57 cosponsors who were instrumental in bringing this 
resolution to the floor today.
  Mr. Speaker, I first became aware of MPS because of Allison Kirch, a 
student in my district who suffers from such a disorder. Her parents, 
Susan and Larry, and her sister Helen are tireless in their care for 
Allison and their dedication to furthering the cause of MPS patients.
  It is because of people like Allison and Helen, Susan and Larry that 
I feel so strongly about MPS disorders. Allison, now 10, was first 
diagnosed at the age of 3. Today she is a happy fifth grader at Spence 
Elementary School in LaCrosse, Wisconsin. The Kirch family, along with 
Les Sheaffer, Kym Wigglseworth, and Sissi Langford of the MPS Society, 
have done so much to educate me and others about this cause and issue.
  Today's resolution is just a small part of furthering awareness of 
MPS disorders. There is so much more that can and must be done. As 
Members of Congress, we must take the lead in authorizing funds for 
research of MPS and ML disorders. As citizens, we must advocate 
tirelessly on behalf of the families who selflessly and tirelessly care 
for their loved ones. On behalf of Allison and her family, I am proud 
to

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advocate for this resolution on the House floor and hope my colleagues 
will join me in honoring such a worthy cause today.
  Mr. Speaker, I yield back the balance of my time.
  Mr. DENT. Mr. Speaker, I urge all Members to support adoption of H. 
Res. 85, and I yield back the balance of my time.
  The SPEAKER pro tempore (Mr. Bradley of New Hampshire). The question 
is on the motion offered by the gentleman from Pennsylvania (Mr. Dent) 
that the House suspend the rules and agree to the resolution, H. Res. 
85.
  The question was taken; and (two-thirds having voted in favor 
thereof) the rules were suspended and the resolution was agreed to.
  A motion to reconsider was laid on the table.

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