Turner Syndrome Foundation Patient Workshop in Neptune

     The Turner Syndrome Foundation will be holding its fall patient workshop in the Specialty Care Center at Jersey Shore University Medical Center.  Because TS is a completely random genetic mutation and non-familial, most patients are not familiar with the condition, and therefore, diagnosis arrives later in adolescence keeping them from obtaining critical screenings, early interventions, and medical treatments. These workshops serve to educate patients about managing the condition and allow them to interact with medical professionals who have expertise in Turner Syndrome.  The agenda for the workshop  includes sessions on managing the condition, cardiology, resiliency, and nutrition.                                     

·         DATE AND TIME: 

Saturday, September 21, 2013 8:30 a.m.-noon

Location: Specialty Care Center at K. Hovnanian Children’s Hospital, Jersey Shore University Medical Center, 61 Davis Avenue, Neptune, NJ 07753 (agenda attached)

·         INTERVIEW CONTACT

·         Local media contact: Caitlin Gong, cgong@tsfusa.org, direct phone: (732) 847-3385

·         TSF Office#: 732-847-3385

·         TSF Fax#: 800-594-3862

·         Website:      www.TSFUSA.org

·         Mailing address:  Turner Syndrome Foundation, Inc., PO Box 726, Holmdel, NJ 07733

·         REGISTRATION:

Participants must register by going to http://www.turnersyndromefoundation.org/events-patient.html

• COST: Free

·         Workshop includes children’s program and a continental breakfast for all participants

 TSF PUBLICITY CONTACT:

Pediatric Specialty Care Center

Phone: 732-776-4937   Fax: 732-776-4867

Carol Porter, MSW, LCW

Direct Phone:  732-776-4937

Email:  cporter@meridianhealth.com

Workshop Agenda

Turner Syndrome Foundation Workshop

WHEN: Saturday, September 21, 2013 8:30 a.m. – Noon

WHERE: The Specialty Care Center at K. Hovnanian Childrenʼs Hospital

Jersey Shore University Medical Center/Meridian Health System

61 Davis Ave., Neptune, NJ 07753

Ph: 732-776-4937

COST: This workshop is provided free of charge!

WELCOME!

This workshop is designed to educate and support patients diagnosed with Turner Syndrome and their caregivers.

All Topics are presented by knowledgeable, experienced health care providers. Turner Syndrome Foundation workshops have

been organized since 2009, reaching out to patients in communities where they live. Many families travel a great distance to

increase their understanding, gain new perspectives, learn about resources and connect with others.

PROGRAM 8:30 a.m. – 12:00 p.m. Childcare Program: An enriching program for children and

their siblings ages This program will allow older patients and caregivers to

fully participate in the workshop and discuss topics freely.

8:30 a.m. REGISTRATION & Continental Breakfast

WELCOME: Laura Fasciano, Turner Syndrome Foundation Coordinator

9:00 a.m. Topic: TURNER SYNDROME UPDATE

Speaker: Margarita Smotkin-Tangorra, D.O., Pediatric Endocrinologist

Designed for adult patients and caregivers regarding ongoing diagnostics, treatments, and interventions to

optimize outcomes and support longevity for patients with TS.

PowerPoint presentation followed by Q & A from audience

10:00 a.m. Topic: CARDIOLOGY and TS

Speaker: Stephanie Chin, M.D., Pediatric Cardiologist

A review of the incidence of cardiac symptoms, diagnostic testing, interventions, therapies and

a discussion of options for cardiac care to optimize heart health in patients with TS.

PowerPoint presentation followed by Q & A from audience

11:00 a.m. Topic: NUTRITION and TS for Kids

Speaker: Jane Reinertsen, Registered Dietician

Maintaining optimal health begins with a patientʼs understanding the importance of nutrition, exercise, and weight management in girls and women living with Turner Syndrome.

Interactive discussion followed by Q & A from audience.

11:00 a.m. Topic: RESILIENCY and TS for Adults

Speaker: Carol Porter, M.S.W., Licensed Social Worker

Resiliency is not genetic, but it can be taught! Learn 10 factors to not only cope with TS, but to deal with anything that life may send your way. The emotional impact of infertility will be discussed in the adult/caregiver session. Interactive discussion with Q & A from audience

11:30 a.m. RESILIENCY and TS for Kids (same as above)

11:30 a.m. NUTRITION and TS for Adults (same as above)

12:00 p.m. Closing remarks: Laura Fasciano, Turner Syndrome Foundation Coordinator