[Congressional Record (Bound Edition), Volume 158 (2012), Part 7]
[Senate]
[Page 8895]
[From the U.S. Government Publishing Office, www.gpo.gov]




 SENATE RESOLUTION 490--DESIGNATING THE WEEK OF SEPTEMBER 16, 2012, AS 
``MITOCHONDRIAL DISEASE AWARENESS WEEK'', REAFFIRMING THE IMPORTANCE OF 
AN ENHANCED AND COORDINATED RESEARCH EFFORT ON MITOCHONDRIAL DISEASES, 
  AND COMMENDING THE NATIONAL INSTITUTES OF HEALTH FOR ITS EFFORTS TO 
          IMPROVE THE UNDERSTANDING OF MITOCHONDRIAL DISEASES

  Mrs. BOXER submitted the following resolution; which was referred to 
the Committee on Health, Education, Labor, and Pensions:

                              S. Res. 490

       Whereas Brittany Wilkinson, the first Youth Ambassador of 
     the United Mitochondrial Disease Foundation, joined other 
     Youth Ambassadors of the United Mitochondrial Disease 
     Foundation in working tirelessly to raise awareness about 
     mitochondrial diseases;
       Whereas mitochondrial diseases result from a defect that 
     reduces the ability of the mitochondria in a cell to produce 
     energy;
       Whereas, as mitochondria fail to produce enough energy, 
     cells cease to function properly and eventually die, leading 
     to the failure of organ systems and possibly the death of the 
     affected individuals;
       Whereas mitochondrial diseases can present themselves at 
     any age, and mortality rates vary depending upon the 
     particular disease;
       Whereas the most severe mitochondrial diseases result in 
     the progressive loss of function in multiple organs, 
     including the loss of neurological and muscle function, and 
     death within several years;
       Whereas mitochondrial diseases are a relatively newly 
     identified group of diseases, first recognized in the late 
     1960s, and diagnosis of mitochondrial diseases is extremely 
     difficult;
       Whereas there are more than 100 identified primary 
     mitochondrial diseases, but researchers believe there are 
     several hundred other types of unidentified mitochondrial 
     diseases and further research is necessary to help identify 
     those diseases;
       Whereas mitochondrial dysfunction is associated with many 
     diseases, such as Parkinson's disease, Alzheimer's disease, 
     amyotrophic lateral sclerosis, autism, diabetes, cancer, and 
     many other diseases associated with aging;
       Whereas research into primary mitochondrial diseases can 
     provide applications to biomedical research and a window into 
     our understanding of many other diseases, including possible 
     treatments and cures for diseases such as Parkinson's 
     disease, Alzheimer's disease, amyotrophic lateral sclerosis, 
     autism, diabetes, cancer, and many other diseases associated 
     with aging;
       Whereas researchers estimate that one in 4,000 children 
     will develop a mitochondrial disease related to an inherited 
     mutation by 10 years of age, and recent studies of umbilical 
     cord blood samples show that one in 200 people could develop 
     a mitochondrial disease in their lifetime;
       Whereas researchers also believe that those numbers could 
     be much higher, given the difficulty associated with 
     diagnosing mitochondrial disease and the many cases that are 
     either misdiagnosed or never diagnosed;
       Whereas there are no cures for mitochondrial diseases, nor 
     are there specific treatments for any of those diseases;
       Whereas human energy production involves multiple organ 
     systems, and therefore primary mitochondrial diseases 
     research involves many Institutes at the National Institutes 
     of Health;
       Whereas, according to the National Institutes of Health, 
     more than $600,000,000 is being spent on research related to 
     mitochondrial functions, of which $18,000,000 is being spent 
     on actual primary mitochondrial diseases research;
       Whereas the National Institutes of Health has taken an 
     increased interest in primary mitochondrial diseases and has 
     sponsored a number of activities in recent years aimed at 
     advancing mitochondrial medicine, including incorporating 
     research into functional variations in mitochondria in the 
     Transformative Research Awards Initiative;
       Whereas, in March 2012, the National Institutes of Health 
     convened a 2-day symposium entitled ``Translational Research 
     in Primary Mitochondrial Diseases: Obstacles and 
     Opportunities'', which brought together leading government 
     and private sector researchers and drug developers to share 
     information related to primary mitochondrial diseases, 
     develop systems to facilitate future collaboration, survey 
     obstacles, needs, and priorities of primary mitochondrial 
     diseases research, and develop mechanisms to enhance 
     translation of basic science discoveries to diagnostics and 
     therapeutics; and
       Whereas, as a consequence of the symposium, a white paper 
     has been developed that identifies current research 
     challenges and impediments and a suggested course of action 
     to address those challenges: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates the week of September 16, 2012, as 
     ``Mitochondrial Disease Awareness Week'';
       (2) reaffirms the importance of an enhanced and coordinated 
     research effort aimed at improving the understanding of 
     primary mitochondrial diseases and the development of 
     treatments and cures;
       (3) commends the National Institutes of Health for its 
     efforts to organize the symposium entitled ``Translational 
     Research in Primary Mitochondrial Disease: Obstacles and 
     Opportunities'' to improve the understanding of mitochondrial 
     diseases and to enhance collaboration and chart a course for 
     the future with respect to research on mitochondrial 
     diseases;
       (4) encourages the National Institutes of Health to place a 
     greater priority on research into primary mitochondrial 
     diseases, to continue to explore the connections between 
     mitochondrial dysfunction and other systemic diseases, and to 
     promote collaboration and coordination among the Institutes 
     of the National Institutes of Health and with other 
     organizations; and
       (5) encourages the National Institutes of Health to 
     consider the recommendations and address research directions 
     identified in the white paper developed from the symposium 
     described in paragraph (3), including--
       (A) enhanced emphasis on research regarding basic 
     mitochondrial physiology, variations in mitochondrial 
     function in different body tissues, and improvements in the 
     manipulation of mitochondrial DNA;
       (B) supporting research that will provide the basis for 
     drug development, including improved mouse models, efforts to 
     achieve breakthroughs in in vivo research capability, 
     consensus development around assays, and next generation 
     sequencing;
       (C) expansion and support of stable, long-term patient 
     registries and biospecimen repositories in collaboration with 
     patient advocacy groups to promote enrollment and ultimately 
     pave the way for natural history trials; and
       (D) the establishment of a working group to develop a 
     system for the continued interaction among the Institutes 
     within the National Institutes of Health and with other 
     organizations and the establishment of a website on research 
     on primary mitochondrial diseases.

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