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- Posted Wednesday May 18, 2016
Focus On Lyme executive director to speak at Capitol Hill science forum
Arizona-based group advocates for a definitive test for Lyme disease being developed by TGen
WASHINGTON, D.C. - May 18, 2016 - Tammy
Crawford, Executive Director of Focus On Lyme, will speak
this week at a Capitol Hill science and policy forum in an effort
to secure funding for a definitive test for Lyme disease.
Focus On Lyme is supporting work by the Translational
Genomics Research Institute (TGen), a Phoenix-based non-profit
biomedical research institute, to create an accurate genetic test
for this disease, which the U.S. Centers for Disease Control and
Prevention estimates affects nearly 300,000 Americans each
year.
"No other infectious disease affects so many people in this nation
and yet has no accurate means of diagnosis," said Crawford, of
Gilbert, Ariz., whose daughter, Jessica, contracted Lyme disease
four years ago. "Failure to sufficiently fund the research needed
to accurately detect and treat this debilitating disease will only
mean higher national healthcare costs in the future."
Both the National Institutes of Health (NIH) and the Department of
Defense (DoD) have recently asked for funding to develop an
accurate test for Lyme disease.
Crawford is scheduled to speak Thursday, May 19, between 3-6 p.m.
at the Lyme Disease Science and Policy Challenges Forum at the
Rayburn House Office Building. Details of the forum are at: http://www.lymeactionnetwork.org/events.html.
Focus On Lyme has been instrumental in generating
$200,000 for TGen to support research into the development of a
quick, affordable and accurate method of diagnosing Lyme disease,
which is the most common vector-borne illness in the U.S.
Today, no perfect test for Lyme disease exists due to three main
barriers: multiple strains of Lyme bacteria often confound test
results; the existence of related bacteria may cause false positive
test results; and most Lyme infections typically present at a level
not detectable by current testing methods.
Scientists at TGen's Pathogen Genomics Division, or TGen North, in
Flagstaff, Ariz., are using the power of DNA sequencing to develop
and validate a test to measure the presence and severity of
tick-borne Lyme disease at the genomic level.
By analyzing a sample's DNA, the new test should be able to
pinpoint Lyme disease, identify multiple Lyme strains, detect other
tick-related infections, and show non-Lyme causes of disease.
"With recent advances at TGen and genomics overall, we can
finally develop a diagnostic test that will put more actionable
information into the hands of the physician than previously
possible," said Dr. Paul Keim, Professor and Director of TGen North
and Director of the Center for Microbial Genetics & Genomics at
Northern Arizona University (NAU), which is helping develop the
test.
The bacterium that causes Lyme disease occurs naturally in mice,
squirrels and other small animals. The infection spreads as ticks
feed on these animals and then bite humans.
This infection can manifest with a bulls-eye rash or a
non-specific rash, but not always. Flu like symptoms, such as
fever, headache, body aches and fatigue can last a few days to a
few weeks.
Undiagnosed and untreated cases can lead to fatigue, painful and
swollen joints, memory loss, insomnia, heart palpitations,
difficulty with concentration and other changes, including those
that mimic other diseases, complicating a clinical
diagnosis.
This is why an accurate diagnostic tool is essential.
"We chose to partner with TGen because they have the best and most
experienced pathogen researchers in the world," Crawford said.
"TGen has a proven record of success. I am convinced there is no
one more qualified to develop an improved diagnostic test for Lyme
disease."
Lyme disease was first described in 1977 following investigation
of a cluster of arthritis cases among children living near Lyme,
Conn. Further study indicated that arthritis was a manifestation of
a tick-transmitted disease.
If detected early, most cases of Lyme disease can be
successfully treated with antibiotics. Lyme disease can be
prevented by: using insect or tick repellent, promptly removing
ticks, applying pesticides, treating pets for ticks, and reducing
tick habitat. The ticks that transmit Lyme disease also can
transmit other tick-borne diseases.
Focus On Lyme hosted a scientific conference about Lyme
disease in February in Paradise Valley, Ariz., bringing together
researchers, clinicians and others to discuss diagnosis and
treatment for Lyme patients.
Additional facts about Lyme disease:
• Lyme disease is caused by bacteria called
Borrelia burgdorferi that is only transmitted to humans
when they are bitten by an infected tick.
• Lyme disease currently is diagnosed by medical
history, physical exam, and sometimes a blood test. It may take
four to six weeks for the human immune system to make antibodies
against Borrelia burgdorferi and therefore show up in a
positive blood test. Patients with the Lyme rash often have a
negative blood test. Diagnosis currently is based on the
characteristic appearance of the rash.
• Researchers didn't identify the cause of Lyme
disease and connect it with ticks until 1981. The bacterium that
causes the disease is named for Willy Burgdorfer, the scientist who
made the connection.
For more information, please visit Focus On Lyme at: focusonlyme.org.
# # #
About Focus On Lyme
Focus On Lyme was formed in 2015 to discover solutions
in diagnostics, prevention, treatment and advocacy for Lyme disease
sufferers. The best Lyme diagnostic tools that exist today
are only 50 percent accurate and for those that are correctly
diagnosed, there is not an accurate tool to evaluate the
effectiveness of their treatment. Focus On Lyme is
striving to provide immediate diagnosis and treatment to Lyme
patients worldwide delivering a higher quality of life and minimal
long-term effects. Focus On Lyme is sponsored by
Leadership Children's Foundation, a non-profit organization
dedicated to helping children by donating money to causes that help
preserve childhood and improve the quality of life for young people
across the nation. For more information, visit: www.focusonlyme.org.
Media Contact:
Tammy Crawford
480-235-1420
[email protected]
About TGen
Translational Genomics Research Institute (TGen) is a Phoenix,
Arizona-based non-profit organization dedicated to conducting
groundbreaking research with life changing results. TGen is focused
on helping patients with neurological disorders, cancer, and
diabetes, through cutting edge translational research (the process
of rapidly moving research towards patient benefit). TGen
physicians and scientists work to unravel the genetic components of
both common and rare complex diseases in adults and children.
Working with collaborators in the scientific and medical
communities literally worldwide, TGen makes a substantial
contribution to help our patients through efficiency and
effectiveness of the translational process. For more information,
visit:www.tgen.org. Follow TGen onFacebook,LinkedInandTwitter @TGen.
Media Contact:
Steve Yozwiak
TGen Senior Science Writer
602-343-8704
[email protected]