Team TSF's Fifth Year at the New Jersey Marathon

TEAM TSF and Turner Syndrome Foundation (TSF) will be running strong again this year as an official charity and beneficiary of the 2014 Novo Nordisk NJ Marathon weekend, April 26-27 in Long Branch, NJ. This family fun weekend includes a non-competitive 5K, kids’ races, games, music, and much more on Saturday followed by the NJ Marathon, Long Branch Half Marathon, and Half Marathon Relay on Sunday.  TEAM TSF first participated in this event five years ago and it is their most successful athletic fundraiser. Not only is it a great source of funds and a great way of raising awareness about Turner Syndrome (TS), it also brings together many families affected by TS who otherwise would not have met.  

Last year was a very successful year at the New Jersey Marathon with participants coming all the way from Maine to support the foundation. A mother and daughter team walked the half marathon together and it was a remarkable triumph for the daughter who has Turner Syndrome. This year the foundation hopes to have more great moments with new participants and so far has ten registered participants. Running clubs, track and cross country teams, and walkers and runners interested in supporting a great cause are invited to join this heel-to-pavement movement and help raise the volume about this complex condition.

What makes someone want to support the Turner Syndrome Foundation? Some have family members or friends affected by Turner Syndrome or have lost a loved one to this condition and this event helps to foster a sense of community for these individuals. One participant runs every year in memory of her stillborn daughter and said, “Even though it has been almost three years since I held her in my arms, I carry her with me everywhere I go. She resides in my heart and in my mind. She is spoken of by my living children and remembered by her grandparents. Her life, though short, is celebrated…We cherish each and every memory and rejoice in being able to create new memories in her honor!”

Turner Syndrome is the number one chromosomal anomaly affecting females only and occurs in approximately 1 in every 2000 live female births. Yet, most people have never heard of it unless they know someone who has TS.  The most common features of TS are short stature and infertility but many of these girls and women also suffer from heart and kidney defects, hearing loss, learning disabilities and social issues.  Many go undiagnosed until teen years or later and don't receive the help they need.  With early intervention, proper medical treatment and therapies, these girls and women can lead relatively normal lives and thrive in society.  The goal of TSF is to advance communications and raise awareness of this condition by facilitating education and research initiatives.

Ava, now age 5, is one of the lucky girls who received a diagnosis in utero and has been receiving the appropriate medical attention and therapies since birth.  Ava received Early Intervention and now gets occupational, speech, and physical therapies at her school.  She has heart and kidney defects and has undergone at least 15 medical procedures including seven surgeries already in her short life.  There is a strong possibility she will need heart surgery and may lose one of her kidneys.  She is a happy, sweet, well-adjusted preschooler and things could be very different for her today had she not been diagnosed like so many other little girls.

You can help these girls by joining TEAM TSF as a volunteer, walker or runner at the 2014 Novo Nordisk NJ Marathon weekend. For more information on how to join the team, go to www.tsfusa.org or call TSF at 800-594-4585 or email coach@teamtsf.org. For any additional questions, please contact Joan DeVito, Team TSF program assistant, by emailing jdevito@tsfusa.org. You could also sponsor a runner by completing an offline donation form which can be found by visiting https://tsf.myetap.org/fundraiser/njm2013/. Your support is integral to the success of this important awareness event.