[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 490 Introduced in Senate (IS)]

112th CONGRESS
  2d Session
S. RES. 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.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             June 12, 2012

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

_______________________________________________________________________

                               RESOLUTION


 
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.

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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