SILVER SPRING, Md.,
May 1, 2016 /PRNewswire-USNewswire/
-- On May 15, the Tuberous
Sclerosis Alliance (TS Alliance) will join tuberous sclerosis
complex (TSC) organizations around the world to observe the fifth
annual TSC Global Awareness Day. On this day, thousands of
individuals and families affected by TSC will come together to
increase public awareness of the rare disease and share their
stories of hope for the future.
This year's TSC Global Awareness Day will feature a social
media-based photo-sharing campaign called, "Where in the World is
TSC?" Participants from around the world will be able to
upload their photographs at www.TSCglobalday.org in an effort to
demonstrate how widespread the disease truly is. In addition,
in the United States, the TS
Alliance will host its annual LIDS Step Forward to Cure TSC
National Walk on the Mall in Washington,
DC on May 15, and families all
across the country have advocated for TSC Global Awareness Day
proclamations in their hometowns.
TSC is a genetic disorder that causes tumors to form in vital
organs, primarily in the brain, eyes, heart, kidneys, skin and
lungs. It is also the leading genetic cause of both autism
and epilepsy. TSC is as common as Lou
Gehrig's disease or cystic fibrosis but is virtually unknown
by the general population.
"One million people around the world are estimated to have TSC,
with 50,000 or more right here in the
United States," explained Kari
Luther Rosbeck, President and CEO of the Tuberous Sclerosis
Alliance. "Currently, there is no cure for TSC but ongoing
research continues to be promising, not only for this disorder, but
also for those suffering from autism, epilepsy and even
cancer."
"At least two children born each day in the United States will have TSC," Rosbeck
continued. "However, many cases go undiagnosed or
misdiagnosed due to obscurity of the disease. Events such as
TSC Global Awareness Day are critically important to educate people
about TSC as well as the importance of TSC research and how it
relates to other more common diseases throughout the world."
TSC Global Awareness Day is sponsored internationally by
Tuberous Sclerosis Complex International (TSCi), a worldwide
consortium of TSC organizations of which the TS Alliance is a
member. Formed in 1974, the TS Alliance is dedicated to
finding a cure for TSC, while improving the lives of those affected
through the stimulation and sponsorship of research; development of
programs, support services and resource information; and the
development and implementation of public and professional education
programs designed to heighten awareness of TSC.
"Organizations around the world, like the TS Alliance here in
the U.S., play a vital role in supporting anyone affected by TSC,"
said David Fitzmaurice, Chair of the
TS Alliance Board of Directors. "They made a huge difference in the
life of my young son when he was diagnosed with TSC and we had
nowhere else to turn."
For more information, visit www.tsalliance.org or view
public service announcements on TSC at www.IAMTSC.org.
TS Alliance Media Contact:
Jaye Isham
(301) 562-9890
jisham@tsalliance.org
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SOURCE Tuberous Sclerosis Alliance