In 1998, I was Director of Athletics at a school for learning different children, a basketball coach, and a field hockey referee. My husband worked for a computer company and our three children were in 8th grade, a freshman at the University of North Texas, and a junior at the University of Texas. Life was good.

I had taught at my school for 7 years and it was by far the best teaching position I had ever experienced. It was my second family, my best friends were there and it was a school full of magic with teachers who could work miracles with children who learn differently from the rest of us. [ Full story... ]

Through the Stevens Johnson Syndrome Foundation we heard about Tiffany, a girl the same age as our daughter Mari, who also suffered from SJS. Incredibly enough she also lives in South Florida, about 15 minutes from where we live. After a few phone conversations, both sets of parents decided the girls needed to meet. Mari was very excited and wanted to buy something for Tiffany and I guess Tiffany was also on the same page because when she arrived at our house she had a gift for Mari. They played for a little while, but Mari wasn't feeling all that great and she fell asleep but woke up in time to see Tiffany off. The next time they saw each other was at Dr. Tseng's office (eye specialist) on Oct 6th, and they hugged each other like they had been best friends since the day they were born. They exchanged stickers and it was very hard to get them to say goodbye to each other. Mari is very happy to have met Tiffany and viceversa. As you can see from the picture theirs has been a match made in heaven!

It is with great sadness that we announce the loss of Leroy Calvert. As you may remember from our last newsletter, Roy was suffering with bladder and liver cancer. He lost his battle very quickly. He passed away at home on October 22. He was 81 years old. Roy was a member of the SJS Foundation Board of Directors

He strived to get the word out about SJS. His dedication to our cause was exceptional. He was a retired employee of the Long Island Rail Road. Roy leaves behind his loving wife Kay and daughter Pam and grandchildren and great grandchildren. He was preceded in death by his son, Robby.

Our prayers and condolences are with his family. He will be sadly missed.

SJS is not rare. We need public awareness of this devastating reaction. I hear from families and patients every day suffering from this nightmare. There is nothing more heartbreaking than to hear a person’s cries and anguish over losing a loved one to a medication, or to listen as they suffer blindness, lung damage or many of the other debilitating side-effects from SJS/TEN. They all ask the same question. WHY? Why didn’t anyone tell us about this? Why weren’t we warned? I don’t know the answer to that, but I do know this, together we can get it out in the open. We can get results. One voice alone is not enough. We need your help! [ Full article ]

In the past few months we have sent out numerous bears and blankets to our little SJS victims. For a $30.00 donation you can sponsor a Bear & Blanket to comfort an SJS child Your donation is tax deductible and very much appreciated.

Please make checks payable to SJS Foundation
enter: SJS Kids Comfort in the memo section of your check.

A very special thank you to those who particpated in the Candle Fundraiser. The fundraiser ended on November 15, And we are happy to say that 228 candles were sold. We appreciate your help and dedication.

Volunteers:

Bill Sarosky
Maralee Billota
Janey Links
Amit Khatri
Surendra Khatri
Tushar Khatri
June Eggleston
Jean McCawley
Dan McCawley

Thank you to Cyndee Callaway at the Westminster Colorado Walmart store for inviting us to participate during Walmart Health and Safety month. Our wonderful volunteers spent October 2nd and 3rd passing out SJS Fact Sheets to over 1000 people.

Volunteers:

Amit Khatri
Jeanne Eggleston
Lindsay Callaway
Racheal Callaway
Jean McCawley
Julie McCawley
Dan McCawley