SSSA 2010
Conference
July 9 - July 11, 2010
Arlington, Texas
Sheraton Hotel
Arlington, Texas will be the proud host city of the SSSA Conference in 2010.
Sotos Gene Discovered
Our esteemed Medical Advisory Board offers their coordinated point of view to help us understand what this means for all of us. The goal of this letter is to inform parents, provide perspective and look to the future.
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Doctor Appointments
Every family attending the conference is offered a private consultation with one of the expert doctors. There is no additional charge for the appointment.
When Is The Appointment?
Families attending the conference for their first time will have their appointment on Sunday afternoon between 1:00 PM and 5:00 PM.
Returning families will have their appointment on Friday afternoon between 1:00 PM and 5:00 PM.
Appointments are 20 minutes long. We will e-mail you your exact appointment time after we receive your registration forms.
If you have travel constraints (e.g. you have to catch a plane), just include a note with your registration form and we'll do our best to accommodate your needs.
What Happens At The Appointment?
The exams are non-invasive. The doctor may measure your child's head circumference and height and take a photo of your child. You and the doctor will review your child's medical and developmental history and discuss any questions and concerns you may have. The doctor will focus on the items that are most important to you.
You can still have an appointment even if you don't bring your child with Sotos Syndrome to the conference.
What To Bring
If this is your first appointment, it is helpful to bring the following the following items. Don't worry if you don't have all of them. The doctors can still provide lots of useful advice just by meeting with your child and talking with you.
- Photos at birth, 1, 3, 6 and 9 months and 1, 2 and 3 years of age
- Photos of parents, grand-parents and siblings
- Growth charts for head circumference and height
- Results from previous tests such as genetic testing, blood tests, bone age scans
- History of medical and developmental issues
- Any available MRI films, particularly of the head. The actual films or CD of the scans are needed, not just the written reports, since Dr. Schaefer looks for very subtle features that other people may have missed. The hospital should lend these to you at no charge.
Disclaimer
These are not official medical visits. The expert doctors can not practice medicine in locations where they are not licensed. These appointments are consultations to answer questions, not to make official diagnoses or recommendations.
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