Support Organization for Trisomy 18, 13 and Related Disorders

 


St. Louis Gateway Arch

26th Annual International Conference

Meet Me in St. Louis

July 18 through July 22, 2012

Click for more information


Submit Your Photos to the Annual 
Kari Holladay Slide Show

To submit your pictures to get in the video montage
(Slide Presentation) Click Here

Deadline: May 15


Balloon Release Request Form
for Non-Attendees

Joey Watson Fund Application 
deadline May 30


SPECIAL NOTICE REGARDING H1N1 and CHILDREN WITH CHRONIC MEDICAL CONDITIONS

As is now well known, there is currently international concern for a potential pandemic due to the newly recognized virus now called H1N1 (“swine flu”).

The Centers for Disease Control and Prevention (CDC) have identified certain groups of persons at higher risk for developing a more serious course of the illness.

Children with neurologic and cardiovascular conditions (which would include children with trisomy 18, 13 and related disorders) are in this high risk group.

The latest recommendation from the CDC and national pediatric infectious disease experts is to start treatment with TAMIFLU (generic name = oseltamivir phosphate) if there are symptoms (for example, fever and cough) suspicious for H1N1.

Treatment should be started within 2 days of the illness in order to improve the course of the H1N1 influenza. Physicians should not wait for confirmatory testing to start treatment in persons in these risk groups.

Families should consult their primary care doctor (or other provider) at the onset of suspicious symptoms.

The following CDC web site has information on dosage, including for infants less than one year http://www.cdc.gov/h1n1flu

Information on the H1N1 vaccine is forthcoming and should be available on the CDC web site and through primary care providers by early October. SOFT children will definitely be in the initial vaccination group.

Dr. John Carey
SOFT Medical Advisor

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SOFT Auction

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Trisomy 13
$10.95
Trisomy 13 - A Handbook for Families
by Stenson et al 1992 (copyright 1999)
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Trisomy 18
$10.95
Trisomy 18 - A Handbook for Families
By Stenson et al 1992 (copyright 1999)
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Trisomy 18
$14.95
Care of the Infant and Child with Trisomy 18 or Trisomy 13
By Ann M. Barnes, R.N. and John C. Carey, M.D. 2008
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Trisomy 18
$10.00
Care of the Infant and Child with Trisomy 18 or Trisomy 13 (E-Book)
By Ann M. Barnes, R.N. and John C. Carey, M.D. 2011
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Send checks for the above
purchases to:

SOFT c/o Barb Van Herreweghe
2982 South Union St
Rochester, NY 14624