[Congressional Record Volume 158, Number 146 (Thursday, November 15, 2012)]
[Senate]
[Pages S6870-S6871]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
NATIONAL MITOCHONDRIAL AWARENESS WEEK
Ms. LANDRIEU. Mr. President, I ask unanimous consent the HELP
Committee be discharged from further consideration of S. Res. 490, and
the Senate proceed to its immediate consideration.
The PRESIDING OFFICER. Without objection, it is so ordered.
The clerk will report the resolution by title.
The assistant legislative clerk read as follows:
A resolution (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.
There being no objection, the Senate proceeded to consider the
resolution.
Ms. LANDRIEU. Mr. President, I ask unanimous consent the resolution
be agreed to, the preamble be agreed to, the motions to reconsider be
considered made and laid upon the table, with no intervening action or
debate and that any statements relating to this measure be printed in
the Record.
The PRESIDING OFFICER. Without objection, it is so ordered.
The resolution (S. Res. 490) was agreed to.
The preamble was agreed to.
The resolution, with its preamble, reads as follows:
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
[[Page S6871]]
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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