TSSKC - Meeting Reports

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Creating AWARENESS,

promoting RESEARCH,

and providing SUPPORT,

for all persons touched

by Turner Syndrome.

To improve the quality of life for individuals and families affected by Turner Syndrome. This is accomplished through the provision of public and professional awareness about the needs and concerns of individuals with Turner Syndrome and their families.

Turner Syndrome Clinic
was held on June 17, 2010
at Children's Mercy Hospital

A “Princess Party” was much more than that to a number of families in Kansas City and surrounding areas. On Thursday June 17th, Children’s Mercy Hospital (CMH) in collaboration with the Turner Syndrome Society of Kansas City (TSSKC) launched it’s first comprehensive Turner Syndrome Clinic. Girls ages birth to 18 years of age with Turner Syndrome were able to receive comprehensive evaluation by the endocrinology staff at CMH including lab work, radiology, audiology screenings, and other services as needed. This was the first step in developing a clinic model that will allow a collaboration of care with all specialty areas required by girls with TS.

With “A Princess Party” as it’s theme, the hospital also sponsored a 3-hour lunch and social opportunity for the girls and their families, including makeovers, manicures, crafts, cookie decorating and much more. It was the beginning of friendships for many and the feeling of relief for others as parents realized they were not alone in this journey of ours. Future clinics will be held every 4 months with the plan to add additional specialty services and parent educational seminars to the day’s activities.

FOX 4 KC Medical Reporter, Meryl Lin McKean, posted a video segment titled "Clinic Gives Hope to Girls Born with Turner Syndrome" about the clinic.

The next clinic is scheduled for Wednesday, October 20th and is open to all families in the Midwest. Please contact Renee with Children's Mercy Hospital at 816-983-6445 for more information regarding the clinic or to schedule an appointment to be seen.

The next clinic is scheduled for Friday, February 11th and is open to all families in the Midwest. Please contact Renee with Children's Mercy Hospital at 816-983-6445 for more information regarding the clinic or to schedule an appointment to be seen.

TSSKC
Annual Picnic
& Pool Party

We had fun and had an opportunity to discuss:

the recent national conference
the latest on the Turner Clinic
a preview of our September meeting focusing on insurance issues.