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Public Statements

Recognizing National MPS Awareness Day

By:
Date:
Location: Washington, DC

* 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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