Dig up your cowboy hat, dust off your boots, and crank up
the country music. Team TSF is headed to
Nashville, TN.
In an effort to raise awareness about Turner Syndrome, the
number one chromosomal condition in women, Turner Syndrome Foundation, Inc. is a
charity of the Nashville Country Music Rock ‘n’ Roll Marathon & ½ Marathon
presented by Nissan.
By joining Team TSF on April 28, 2012, you will be helping
give a voice to the little known, completely random condition affecting 1 in
every 2,000 girls.
“I really want to
see a number of participants. But, I'd also like to see some great attention
given to TS,” said Team TSF leader and TS patient, Paula Schiffer.
Diagnosed at the
age of 16, unfortunately, Schiffer’s late diagnosis is not unusual with TS
patients. Most girls are not diagnosed
until around the age of fourteen, keeping them from treatments and therapies
important to their health.
“When I was
diagnosed, they didn't know much about TS [and] the doctors were a little bit
unsure of possible treatments. In fact, they told me that there was nothing
that could be done for me. Today, there are so many wonderful treatments for TS
girls, “ adds Schiffer, who is now 33 years old.
Treatments have
come a long way since Schiffer’s diagnosis; however, there is always room for
new and better treatments and therapies.
But, even the best treatments may not helpful if the patient is not
diagnosed early in life. Which is why it
is important to create awareness at events like the Nashville Country
Music Rock ‘n’ Roll Marathon & ½ Marathon.
Furthermore, the event is a good
opportunity to meet TS patients, ask questions, and understand what it is like
for the girls and their families.
“TS is
something that strikes girls at their core. The physical and emotional effects
often leave girls wondering who they are (what they are). We want so badly to
experience life and love the way every other girl does, but our stories often
come riddled with scars from our own internal questions about self worth. TS
can't be seen. You will never know for sure if a girl has TS unless she chooses
to disclose it. Many girls and their families are impacted, “ says
Schiffer.
What else is
does Schiffer hope to achieve with this event?
“I think
it's also important for people to understand that TS does not have to limit a
girl’s life. A TS girl is powerful and
can do anything she wants to,” says Schiffer.
Why not
join, Schiffer and the powerful TSF community in Nashville for a fun filled, family
weekend? You can walk, run, volunteer,
or just come and cheer on the participants.
There is even an event for the youngsters on Friday, April 27, ING Kids Rock
Nashville. Beyond the marathon and ½
marathon, the Saturday, April 28th, events include marathon and ½
marathon races for wheelchairs and a post race concert headlined by country
music superstar, Rodney Atkins.
“We need
help getting the word out about TS. We also need to raise funds to support TS
girls. Participating in the marathon achieves both,” says Schiffer.
If you are interested in being a part of TEAM TSF as a
particpant, sponsor or volunteer, please send an email to coach@teamtsf.org.
Turner Syndrome Foundation, Inc., PO Box 726, Holmdel, NJ
07733
www.TurnerSyndromeFoundation.org
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