Team TSF Takes Seattle!

Are you looking for a fun way to celebrate the end of the school year the whole family will enjoy?  Why not join Team TSF on June 23, 2012 for the Dodge Rock ‘n’ Roll Seattle Marathon and ½ Marathon in Seattle, WA. ? 

You and your family and friends can enjoy scenic views along a course that is perfect for any athletic ability.  Runners or walkers are welcome!  If you are not feeling athletic that day, you can donate, volunteer, or come and cheer on the event participants.  The more people to help Team TSF and Turner Syndrome Foundation Inc. spread the word about Turner Syndrome, the #1 chromosomal condition in women, the better.  Affecting 1in 2000 girls, TS is not very well known.  In fact, most patients are not diagnosed until they are about 14 years old, keeping them from important treatments and therapies. 

“I think it is also important to note that there is a spectrum of characteristics for Turners Syndrome. Doctors, teachers and parents should be informed so that these girls can receive support at an early age. It is widely known that early intervention is crucial to ensuring proper health and development,” adds Team TSF leader, Janna Fornia, whose 7-year-old daughter was diagnosed with TS in utero. 

By raising awareness of TS at events like the Dodge Rock ‘n’ Roll Seattle Marathon and ½ Marathon, the diagnosing age of patients will hopefully be lowered to at birth, which is the goal of Turner Syndrome Foundation Inc. 

“I became involved with TSF after I ran my first half marathon in Seattle. I knew I wanted to run another one and make it meaningful by joining a charity. After googling around I knew that TSF would be the perfect match. I ran the Arizona Rock and Roll half marathon with TSF and loved that I was running for something bigger than myself,” says Fornia.  “Rock and Roll races reach thousands of people and we can bring awareness to the cause and provide information while setting a healthy example for our daughters,” adds Fornia. 

For more information on how to join Fornia and Team TSF to support a good cause while having fun and exercising, or to donate or volunteer go to: 

Turner Syndrome Foundation, Inc. Website: www.TSFUSA.org

Official Event Website: http://runrocknroll.competitor.com/seattle/event-details

 www.TurnerSyndromeFoundation.org

Music City Marathon!

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 28^th, 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. 

Register or sponsor a participant!

Turner Syndrome Foundation, Inc., PO Box 726, Holmdel, NJ 07733

www.TurnerSyndromeFoundation.org

Florida Here We Come!

It’s almost time for the second event in the Rock ‘n’ Roll marathon series.  Team TSF will be traveling to St. Petersburg, FL on February 12, 2012 for the Rock ‘n’ Roll St. Pete ½ Marathon Series. 

The goal of Team TSF, and Turner Syndrome Foundation, Inc., is to raise awareness for Turner Syndrome.  Turner Syndrome is the number one chromosomal condition in women, affecting 1 in every 2000 girls.  Even though it is fairly common, Turner Syndrome is little known.  In fact, most patients don’t get diagnosed until around the age of 14, keeping them from important treatments and therapies. 

“We need research to find new and better treatments plus education for expecting parents,” adds John Dunn, a Team TSF member whose granddaughter has TS. 

By participating with Dunn and Team TSF in the St. Pete marathon, you will be helping bring awareness to Turner Syndrome which will, hopefully, help lower the diagnosing age for patients.  The earlier TS girls begin treatments and therapies the better.

If you don’t feel like walking or running the marathon, Team TSF can always use volunteers the day of the event, or you can come and cheer on the participants. 

“[The St. Pete Event is a great way] to stimulate people asking questions at the race about TS  [as well as] a great way to promote healthy life style and spread positive messages,” said Dunn. 

Beyond an opportunity to spread the news about TS, the event is a great way to have fun with friends and family, and meet new people.  The race will be held on a flat, easy course with music at every mile.  Perfect for any level of athletic ability.  There will also be a pre race pasta party and a post race concert headlined by Flo Rida. 

Can’t make it to Florida?  Team TSF will be participating in events in Nashville, TN in April; Long Branch, NJ in May; and Seattle, WA in June. 

For more information, or to register for the event, visit:

Turner Syndrome Foundation website: www.tsfusa.org or email coach@teamtsf.org

Official Event Website: http://runrocknroll.competitor.com/st-petersburg

Donate online!

Turner Syndrome Foundation, Inc., PO Box 726, Holmdel, NJ 07733

www.TurnerSyndromeFoundation.org

Are You Ready To Run?

Lace up your running shoes, grab your friends and family, and finalize your travel arrangement with LP Travel.  The P. F. Chang’s Arizona Rock ‘n’ Roll Marathon & ½ Marathon is less than two weeks away! 

As an official charity, Turner Syndrome Foundation, Inc. has 12 participants (Team TSF) for the event in Phoenix, AZ; but more are welcome.

“ [We have] participants from PA, AZ, WA, and NC,” said Team TSF leader and Turner Syndrome mom, Donna Villavicencio.

Not a runner or walker?  You can volunteer to help out at the event, donate to support a runner, or come and cheer on the participants and learn more about Turner Syndrome, a little known chromosomal condition affecting 1 in every 2000 girls. 

Because it is a completely random condition, many TS patients do not get diagnosed until they are teens, keeping them from important medical treatments.  It is the goal of Turner Syndrome Foundation, Inc. and Team TSF to raise awareness about Turner Syndrome and get the diagnosing age for TS patients lower and lower. To help reach this goal, volunteers are sought to help this ever-expanding foundation bring important programs to a city near you. 

“TSF is a great organization and needs the support of others to help raise awareness and funds.  Our fundraising goal [for the P.F. Chang’s Rock ‘n’ Roll Arizona Marathon & ½ Marathon] is $15,000,” said Villavicencio. 

But, beyond supporting a great cause, the event serves as a day to meet great new friends and enjoy a fun day in the Arizona sun in the dead of winter. 

 “This is a fun event and a nice flat course with musicians playing every mile.  The residents [of Arizona] are awesome as well and will be out there cheering,” said Villavicencio.   “7 of the 12 [participants] are my friends and include 1 TS dad; 2 TS moms; 1 TS Grandma,” added Villavicencio, who is a former Arizona resident.

What advice does Villavicencio give to those who have never participated in a marathon before?

“Have fun!  It's not every day you get to do a half or full marathon and you should enjoy the ride,” said Villavicencio who has participated in a ½ marathon and full marathon in Arizona before. 

Can’t join Team TSF in Arizona?  We are also participating in events in St. Petersburg, FL; Nashville, TN; Seattle, WA; and Long Branch, NJ throughout the year. 

For more information on Turner Syndrome or to register to join Team TSF, go to www.tsfusa.org. 

For event information: http://runrocknroll.competitor.com/arizona

To Donate to Team TSF:

 https://tsf.myetap.org/fundraiser/pfchangrocknrollphoenixaz/aboutEvent.do

To Donate to Donna Villavicencio’s page: https://tsf.myetap.org/fundraiser/pfchangrocknrollphoenixaz/individual.do?participationRef=3829.0.135882872

St. Petersburg, FL or Bust!!

Are you looking for an excuse to travel to Florida in the dead of winter?  How about supporting TSF?

The Turner Syndrome Foundation is an official charity of the Rock ‘n’ Roll St. Pete ½ Marathon Series in St. Petersburg , Florida on February 12, 2012.

By joining Team TSF with a fundraising commitment for the marathon, you will be helping raise awareness and support for Turner Syndrome, a little known chromosomal condition affecting 1 in 2000 girls, a condition with which early diagnosis and treatment are extremely vital. 

“As a female, I never heard of Turner Syndrome until my niece was diagnosed with this and soon thereafter, her mom became the director and founding president of TSF in Holmdel New Jersey,” said Team TSF leader, Lucretia Fasciano, who decided to become TEAM TSF leader to help the organization with its hard work of spreading awareness about Turner Syndrome.  I have a demanding career in South Florida, but I know that my time and involvement will inherently help spread the word to help others”.

“Not only are we proud of all her work and the new awareness brought to many families, it’s an honor to join in and become a part of this growing organization,” said Lucretia.  The Foundation has facilitated numerous education and awareness programs many for nominal fees to best serve all constituents.  “It is important that we show support so that families know we care.”

Not a runner?  Walkers are always welcome.  You can also sign up to volunteer, sponsor a runner, or just come and cheer on the participants. 

“I will be participating in the St. Pete Marathon event walking the 1/2 marathon,” said Fasciano, and my family will be flying in to join our TEAM TSF.  It is a real family affair!”

 Lace up those sneakers and join Lucretia and Team TSF in sunny Florida for a day of fun and exercise; all while raising support for a good cause!

 “We hope to have a large group joining us for this new event location,” said Lucretia. 

For more information, or to register for the marathon, go to www.tsfusa.org,

For event information: http://runrocknroll.competitor.com/st-petersburg

Event Contact: Lucretia Fasciano at lucretia0012@aol.com or 305-389-3856