Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome
Foundation

 
     Newsletter
December, 2004

  
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Happy Holiday's..!!

happy holidays

Wishing you and your family a Happy Holiday Season!

Thank you to the following people for their generous donations. [ Click here ] to view list.


Betty's story

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... ]

Betty

Kids Meeting Kids!

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!

Tiffany and Mari

In Loving Memory of Leroy Calvert

Roy

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.

FDA Letter Writing Campaign

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 personís 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 didnít anyone tell us about this? Why werenít we warned? I donít 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 ]

!! New !!
Comforting Kids

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.

SJS Bear and Blanket for kids

SJS Candle Fundraiser
Candles

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

October Safety Month at Walmart

October Safety Month at Walmart

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


!! New !! SJS NewsLetter ON LINE

As most of you are aware the SJS Foundation is a non profit organization. We depend on grants and donations to survive. Due to a lack of funding, we have been forced to make some changes. While SJS cases are on the rise, the stigma RARE is still associated with it. Newly diagnosed patients and their families are in dire need of SJS information packets. Unfortunately a decision had to be made to distribute the newsletter that was more cost effective. This will help us to continue to provide information packets to those in need.
Thank you for your understanding and continued support.

If the information contained in our website was helpful to you, please be aware that it has been made available for public access strictly through volunteer effort and funding. The Stevens Johnson Syndrome Foundation is a 501(c)(3) non-profit organization dedicated to promoting public awareness to adverse drug reactions as well as to provide immediate information regarding treatment of those suffering from this devastating affliction. Please help us keep this website running. Your tax-deductible donations will help us to continue this good work.
[ Click here ] to make your generous contribution to SJS Foundation..!!


Articles or advertisements referring to specific programs, services and/or products do not constitute endorsement by the Stevens Johnson Syndrome Foundation. Articles involving medical aspects of SJS are not intended to be medical advice and readers are cautioned not to make any changes in their treatment based in information without consulting with a physician.
Information for Donors: The Stevens Johnson Syndrome Foundation is a 501 (C) (3) tax-expempt corporation. All donations to the SJS Foundation are tax-deductible. [ Click here ] for Tax information.
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