[Congressional Record Volume 151, Number 85 (Thursday, June 23, 2005)]
[Senate]
[Pages S7318-S7319]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         SUBMITTED RESOLUTIONS

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 SENATE RESOLUTION 180--SUPPORTING THE GOALS AND IDEALS OF A NATIONAL 
  EPIDERMOLYSIS BULLOSA AWARENESS WEEK TO RAISE PUBLIC AWARENESS AND 
UNDERSTANDING OF THE DISEASE AND TO FOSTER UNDERSTANDING OF THE IMPACT 
             OF THE DISEASE ON PATIENTS AND THEIR FAMILIES

  Mr. SCHUMER (for himself and Mrs. Clinton) submitted the following 
resolution; which was referred to the Committee on Health, Education, 
Labor, and Pensions:

                              S. Res. 180

       Whereas epidermolysis bullosa is a rare disease 
     characterized by the presence of extremely fragile skin that 
     results in the development of recurrent, painful blisters, 
     open sores, and in some forms of the disease, in disfiguring 
     scars, disabling musculoskeletal deformities, and internal 
     blistering;
       Whereas approximately 12,500 individuals in the United 
     States are affected by the disease;
       Whereas data from the National Epidermolysis Bullosa 
     Registry indicates that of every 1,000,000 live births, 20 
     infants are born with the disease;
       Whereas there currently is no cure for the disease;
       Whereas children with the disease require almost around-
     the-clock care;
       Whereas approximately 90 percent of individuals with 
     epidermolysis bullosa report experiencing pain on an average 
     day;
       Whereas the skin is so fragile for individuals with the 
     disease that even minor rubbing and day-to-day activity may 
     cause blistering, including from activities such as writing, 
     eating, walking, and from the seams on their clothes;
       Whereas most individuals with the disease have inherited 
     the disease through genes they receive from one or both 
     parents;
       Whereas epidermolysis bullosa is so rare that many health 
     care practitioners have never heard of it or seen a patient 
     with it;
       Whereas individuals with epidermolysis bullosa often feel 
     isolated because of the lack of knowledge in the Nation about 
     the disease and the impact that it has on the body;
       Whereas more funds should be dedicated toward research to 
     develop treatments and eventually a cure for the disease; and
       Whereas the last week of October would be an appropriate 
     time to recognize National Epidermolysis Bullosa Week in 
     order to raise public awareness about the prevalence of 
     epidermolysis bullosa, the impact it has on families, and the 
     need for additional research into a cure for the disease: 
     Now, therefore, be it
       Resolved, That the Senate--
       (1) supports the goals and ideals of a National 
     Epidermolysis Bullosa Awareness Week to raise public 
     awareness and understanding of epidermolysis bullosa;
       (2) recognizes the need for a cure for the disease; and
       (3) encourages the people of the United States and 
     interested groups to support the week through appropriate 
     ceremonies and activities to promote public awareness of 
     epidermolysis bullosa and to foster understanding of the 
     impact of the disease on patients and their families.

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