As most of you are aware a lawsuit has been filed against the manufacturer of children's motrin in the case of a little girl that went blind.

The SJS Foundation has written to the FDA about Stevens Johnson Syndrome and children's ibuprofen products for over a year. We were told they have not seen an increase in SJS cases. The SJS Foundation has received reports of 2 new cases of SJS already this year to these products in children. We are only 2 weeks into the new year.

There have been more reported cases of SJS to ibuprofen then to acetaminophen. We are all taught not to give children aspirin due to the risk of Reye Syndrome. Yet there is no warning of SJS to the public in NSAIDS for children.

How fast do you really need a fever to come down? A fever is sign of an infection. Many doctors don't even consider a fever a concern if its under 101. We as consumers deserve to be informed of the risk of dangerous sideeffects in over the counter drugs. When this medication was by prescription it carried the warning of SJS, yet when it went over the counter, readily available to all parents the warning was lifted. If you have a child that had SJS to ibuprofen, we urge you to complete the FDA online reporting form and the SJS Foundations Survey Form.

To view the response from the Food and Drug Administration please [ click here ]

Since October 2004, the SJS Foundation has had the honor of being interviewed by the following news agencies. We would like to thank them for helping spread the word about Stevens Johnson Syndrome.

• The New York Times
• Washington Post
• News Day New Paper, NY
• WCBS NEWS RADIO 880 in NY
• The San Jose Mercury News
• The Killeen Daily Herald
• Reuters News Wire
• Dow Jones News Wire
• The Beaver County Times, Beaver, PA
• Wall Street Journal

The SJS Foundation has been receiving numerous calls and emails from the media looking for SJS patients and families to interview. If you would like to be included in a future interview, please contact us by email at sjsupport@aol.com
Please add subject line : SJS INTERVIEW

Include the following information:

• Name
• Phone number
• Address
• Medication
• Year(s) of SJS or TEN
• Sideeffects

If you have not completed our survey form in the past we are urging you to do so now. We need hard facts. Since the initiation of the survey form last year we have had 222 patients complete the form. The FDA's reporting system is not accurate. The only way we will get SJS out is the open is to prove that it is not rare. Not only will completing the survey help in that aspect but we will be able to accurately track certain drugs that have a higher incidence of SJS and lobby for warning labels. Your assistance in this project is greatly appreciated.
[ Click here ] to go the SJS Survey Form

Once again it's time to write to your governor requesting that August be named SJS Awareness Month in your State. We have attached a link to a template letter to help you get started.

Your assistance as always is deeply appreciated.
[ Template Letter, Word format ], [ Template Letter, HTML format ]

It is our honor to welcome Dr. Janis Cotter of Parkway Sclerals to our medical advisory board. Dr. Cotter has been fitting gas permeable scleral contact lenses to diseased eyes for almost 20 years received her doctorate in optometry in 1985 from the New England College of Optometry. [ More ].

The SJS Foundation also welcomes: Dr. Scheffer Tseng to our Medical Advisory Board!
Dr. Tseng serves as Medical Director of Ocular Surface Center, providing the state-of-art to patients suffering from Stevens Johnson Syndrome and Toxic Epidermal Necrolysis. [ More ].

SJS, especially when associated with TENS, is a horrible disease affecting the eye. As the medical director of Ocular Surface Center in Miami, Florida, I have a precious opportunity of seeing and taking care of quite a few patients in the last three years after I left the Bascom Palmer Eye Institute, University of Miami. The following are our progresses made and I would like to share them with you: [ More ]

It is our pleasure to name Mr. Tushar Khatri of Lafayette, Colorado, and Mr. Justin Hebert of Broomfield, Colorado to the SJS Foundation Board of Directors. Tushar and Justin have volunteered many times for the Foundation distributing SJS Fact Sheets to the public and have also helped with the SJS fundraisers. Tushar has a background in computers & management and Justin is presently working towards a degree in Nursing.