Turner Syndrome Foundation News
EDUCATING THE EDUCATORS:
TURNER SYNDROME IN A SCHOOL SETTING4/8/2011
Photos Many thanks to conference organizer, Dr. Suzanne Bousquet, sponsors Kean University and Novo Nordisk for their support, Kean faculty and volunteers for their time, and the patient community for their involvement. Working together, we will make a difference in the life of all children living with Turner Syndrome.
Pre-order DVD $20 + s/h
NEWS AND ANNOUNCEMENTS
TRAVEL FOR TS: Personal and business travel helps fund the TSF mission! More information
Summer Camp 2012
Pepperdine University, Malibu, CA
Camp Carefree, Stokesdale, NC
Camp Maple Leaf, Wallingford, VT
John Baxter Remembered as Pioneer of Biotechnology and Translational Medicine
GENENTECH 9/11: Patients will be receiving a letter on the news that we are discontinuing production of Nutropin 5 mg lyo vials. Nationally, there are only 30 patients on Nutropin 5 and the NuSpin 5 and 10mg lyo vials are alternatives. See attached letter.
ARTICLES
Kick Up Your Cowboy Boots in Nashville, TN
West Coast: Running in Seattle, WA
Turner Syndrome Awareness in St. Pete
Team TSF rocks ARIZONA!!
The Scientist - Opinion: Occupy Science article
Phoenix Arizone here we come!
Are you looking for an excuse to travel to Florida in the dead of winter? How about supporting TSF?
Chayim Y. Newmark, MD Memorial Tribute
A Gathering Like No Other: World Congress on Disabilities
Running for a Cause
Never Stop Learning
Generosity at Its Finest
Spreading the World About Turner Syndrome
Donating Can Be as Easy as Cleaning Out Your Closets
Holiday Fun for Everyone
VIDEOS/MIXED MEDIA:
Watch the Turner Syndrome Diaries - Personal stories of hope
Radio Interview - For the love of a child: An hour long interview with special guests bring insight from diagnosis to a plan of action.
Turner Syndrome Awareness: Public Service Announcement
PF Chang RocknRoll Marathon Series: TSF is a charity for these national races. Lace up and support the cause!
RESEARCH: (scroll down page)
Research is crucial for a multiple of manifestations found in Turner syndrome. Patients, members of the public, healthcare professionals and the media must realize the importance of TSF’s goals to support research initiatives. There are ways you can help:
• Participate in a study in which you qualify.
• Donate to show your support of our mission!
Educate yourself to make an informed decision before participating in a study. Assess if the study is right for you.
Understanding clinical trials - frequently asked questions.
Clinicaltrials.gov Search completed and actively recruiting studies
NIGMS Repository at the Coriell Institute for Medical Research
Antenatal History of Turner Syndrome
The purpose of this survey is to understand the experiences of mothers who have received a prenatal diagnosis of Turner syndrome. The survey is being conducted by the Departments of Obstetrics and Gynecology and of Pediatrics at the University of North Carolina. Your answers to the questions may help, as medical providers, improve prenatal counseling for this condition. This voluntary survey will take approximately 60 minutes of your time to complete.
TESTIMONIALS:
My involvement as a volunteer for the Turner’s Syndrome Foundation was an
amazing experience. Many people never heard of Turner’s syndrome before
and I felt so happy that I was able to share my knowledge of the Turner’s
Syndrome with others. This is a women’s issue that needs to be voiced to
more people. Though this diagnosis only affects girls, everyone should
be aware of it for it can happen to your friend, a family member or even
someone you may know. Nevertheless, the Turner’s Syndrome can be easily
diagnosed when detected early. Through this Foundation it has helped me in
my career path of becoming a pediatrician. -Crystal
The Turner Syndrome Foundation appreciates your comments and feedback. Email: info@tsfusa.org or call (800) 594-4585