Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome

December, 2008
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Congratulations Amit!

The Stevens Johnson Syndrome Foundation congratulates our fantastic webmaster Amit Khatri on his graduation from Metropolitan State College of Denver. Amit is receiving his Bachelor of Science degree in Computer Information Systems.

Amit has volunteered for the SJS Foundation since 1998. He designed and updates our web site. Amit has manned SJS information booths and continually helps spread the word about SJS and TEN. Congratulations Amit, we are so proud of you!

SJS Kids support website!

The Stevens Johnson Syndrome Foundation ( is pleased to announce the launch of SJS Kids Support website which was designed and created by 14-year old Julie McCawley, a victim of Stevens Johnson Syndrome. The purpose of her website is to educate the public about Stevens Johnson Syndrome (SJS) from a child's point of view.

Please visit the website at

Finally a solution!
By, Robert Landsperg

The Stevens Johnson Syndrome Foundation (The Julie Foundation For Allergic Drug Reactions) a non-profit organization based in Westminster Colorado, was founded in 1994 by Jean Farrell McCawley after her 11 month old daughter Julie contracted SJS from the anti - seizure drug Phenobarbital .

The primary function of the foundation is to bring public awareness to this devastating and life threatening illness.

To view full article please: [click here]

Volunteer Support Group
Facilitators Needed

We currently have 23 facilitators in the United States and 7 including Canada and Europe. We are so thankful to our volunteers! The world is a big place, and if you have time we really need your help!

The SJS Foundation would like to thank our volunteer support group facilitators for their wonderful support for SJS victims and their families.

  • Dawn Bundick, Alaska
  • Debra Moulton, Arkansas
  • Jean McCawley, Colorado
  • Grace Adley, Connecticut
  • Sonia Francis-Berges, Florida
  • April Robinson, Georgia
  • Tikeenia Campbell White, Georgia
  • Nichole Willis, Kansas
  • Jami L. Klein, Michigan
  • Marla Daniel, Nevada
  • Regina Adamousky, New Jersey
  • Gina Brancato, New York
  • Mary J Quick, North Carolina
  • Becky Lucas, Ohio
  • Donna Pittman, Oklahoma
  • Robert McMillen, Oregon
  • Christine Ballentine, Pennsylvania
  • John Hornberger, Pannsylvania
  • Pam Shields, South Carolina
  • Marian Guerra, Tennessee
  • Mary (Katie) Niemeyer, Texas
  • Tellis (Ted) LaMar Jr, Virginia
  • Deborah Bareika, Virginia
  • Helen Milne,Canada
  • Edgard Devaux, France
  • Pieter Hoeberichts, Holland
  • Zora, Italy
  • Carol Kerr, Scotland
  • Elisabeth, Sweden
  • Susie Orme, United Kingdom

SJS Shop

Help raise awareness of Stevens Johnson Syndrome by shopping at the SJS awareness shop located at

New items and designs have been added!

Stevens Johnson Syndrome
Bereavement Support Group

This support group is to help those who have lost a friend or loved one to SJS/TEN. A place to share your story and express feelings, knowing that others will be understanding, and supportive.

We ask that only those persons suffering a loss join this group. [Click here] to visit.

In support of
SJS Awareness campaign

My name is Helen Milne and I am the proud mother of Ian, a 10 year old boy who had TEN's at age 3. Like every other parent of a child who has suffered a Stevens Johnson Syndrome reaction, every second of that period is burned into my brain forever. We too had never heard of this before, hence why the awareness drive is so important and I would urge you to take any opportunity to educate people as you go about your day to day.

Ian's story is similar to others in many ways in terms of the first presentation of his symptoms, misdiagnoses as chicken pox then hand foot and mouth disease, complete lack of proactive care and finally after 5 days of agony he was transferred to a burn unit. Within two days he was moved from the burn unit to Paediatric Intensive Care Unit. As soon as Ian was moved to PICU we were asked to leave the room for about 30 minutes and when we came back later, Ian had fallen into a coma and was wrapped from head to toe like a mummy - for any mother this sounds like a nightmare scenario, but in a strangely surreal moment my reaction was "Thank God they have stopped the pain!". It is this solitary moment that reminds me every day that Stevens Johnson Syndrome is an agonizing ordeal and very often pain management is overlooked in the initial period. It is one of the most inhumane experiences that a human being can have. Ian's eyes were very badly affected and he lost skin over 87% of his body. We nearly lost him on three separate occasions but thankfully he pulled through. As you are probably aware, too many SJS patients do not survive, and it was with this knowledge that we gratefully took him home, thinking it was all behind us with no idea that our lives were forever changed and a round of never ending battles was about to begin.

To view full article please: [click here]

SJS graphics for download

The SJS Foundation would like thank our wonderful Swedish support group facilitator for creating free SJS graphics for download.

[Click here] to view free SJS graphic downloads.

For the littlest SJS eyes!

My daughter Julie was only 11 months old when she was stricken with SJS. I remember how difficult it was to find sunglasses that would stay on her little face. I only wish Baby Banz were available then! If you have a little one that suffers photophobia please check out their website. They also have products for adults!

Coupon code: SJSORG good for 10% off all purchase at our online store

How you can help SJS Foundation?

Do your holiday shopping on line and help the SJS Foundation at the same time! Help your favorite cause for free! Shop online at over 680 brand name stores and a portion of each purchase will be donated to your favorite cause! Your stores, your cause, their money.

Over 680 stores, including eBay, Lands' End, Staples, JCPenney, Barnes & Noble,,, Office Depot, QVC, Expedia, Home Depot, HSN, Best Buy, Drs. Foster & Smith, Gap,, & NORDSTROM.

Start With $5 Free!
We'll donate $5 to your cause when you join and shop within 45 days!
iGive - Change Online Shopping for Good

Now you can donate your vehicle to help the SJS Foundation Through Vehicles for charity, the SJS Foundation will receive a check once the car is repaired and sold at auction. Your donation through vehicles for charity is tax deductible. [ Click here ] for more information on how you can help.

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.
© Copyright 1997. All rights reserved. Contact Webmaster: Amit Khatri