What to do, what to do? The SJS Foundation has received numerous calls regarding the H1H1 vaccine asking what our recommendation is. We defer back to the CDC's guidelines. If you are in a high risk category; a child between the ages of 6 months to 24 years, have a chronic health disorder or compromised immune system or you are pregnant, the H1N1 vaccine is recommended. We suggest that you discuss this with your healthcare professional.

Please visit Centers for Disease Control and Prevention [click here]. At the time of this publication the Stevens Johnson Syndrome Foundation has had no reports of SJS related to the H1N1 vaccine.

When my brother and I learned our younger sister Kimberly had Stevens Johnson Syndrome all of our lives were changed forever. I remember a good portion of the summer spent in a hospital waiting room. The sterility of the entire place had the ability to make any young child uncomfortable and when accompanied by hard plastic chairs and nothing to do a kid couldn’t help but hate it.

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On November 14, 2009 16 year old Julie McCawley had the honor of speaking at the Ketogenic Diet Conference held in Scottsdale, Arizona, where she encouraged medical professionals to offer the Ketogenic Diet as a first form of therapy for children with epilepsy. Julie’s emotional introduction was given by Charlie Abrahams of the Charlie Foundation.

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Please continue to check our scrolling marquee on the front page of our website for a special announcement regarding SJS Awareness coming in early January.

On November 16th I rushed to get ready for one of the biggest days of my life. I was invited to have lunch with the first lady! I hurried and put my black and plaid dress with a pair of black leggings. I zipped up my black boots and grabbed my jacket and rushed to the car. The ride to school seemed to take forever; it felt as if we would never get there. When I walked through the front doors of my school and there were people standing at the door waiting for me. Congratulations said one man.

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Please visit the Stevens Johnson Syndrome Foundation prayer list located on the right hand side of our website. Most of us that have had a loved one with SJS believe that prayers work. Please take a few minutes to send your good thoughts and wishes to these patients.

Unfortunately, SJS can result in permanent vision loss and blindness in many of its survivors. Michelle Chacon, a mobility specialist for Adams County School District 50 teachers blind and low vision students. Michelle is also blind herself so she understands the difficulties her students face every day. Michelle educates her students in Braille literacy as well as cane training and is an advocate for her students within their school. We took a moment to talk to Michelle about many of the issues the newly blind survivor and their family will need to face in their new life and she was able to supply us with a wealth of information.

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The SJS Foundation would like to thank the following people for fundraising and promoting awareness of Stevens Johnson Syndrome. We appreciate all You do!

• The McNally Family
• Jill Kleeman
• Elisabeth of Sweden
• Matthew Moore
• John Hornberger

As always thank you to all of our volunteers and support group facilitators.