Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome
Foundation

 
     Newsletter
May, 2010

  
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SJS online Cafepress shop

Stevens Johnson Syndrome Foundation Shop

We have many new designs and products available to help promote SJS Awareness! 10 percent of your purchase will benefit the Stevens Johnson Syndrome Foundation Thank you to Elisabeth Forslund of Sweden and Ernest Madrid of Albuquerque for their brilliant graphic designs and Cynthia McNally for her great ideas and suggestions. Her lovely 11 year old granddaughter Valerie is the inspiration behind the SJS took my breath away line of products.

Thank you for your continued support


Stop the Bullying
of SJS/TEN Children

The Stevens Johnson Syndrome Foundation would like to thank Sarah Boxer for our new section on anti-bullying. This page includes a comprehensive list of resources. Many SJS/TEN survivors are left with lifelong disabilities. These children are often victimized by other students and often even teachers are guilty of this unacceptable behavior. Sarah has researched this subject and provided us with information to help us stop this abuse. The information on the site addresses students, teachers and administrators. [Click here] for detail.

Sarah learned of SJS/TEN first hand when her younger sister Elizabeth developed TEN from over the counter ibuprofen. The entire Boxer family has since dedicated themselves to helping spread Stevens Johnson Syndrome Awareness!

Letters to the White House

If you or your loved one suffered with Stevens-Johnson Syndrome or Toxic Epidermal Necrolysis, we are asking you to participate in this very important Project Please write a compelling letter about your experience with SJS/TEN. If possible please include pictures before, with SJS/TEN and after. This applies to everyone! Canada, Ireland, Sweden, England, where ever you are please participate. SJS is a worldwide epidemic that needs to be recognized. We plan on adding a cover letter and sending them in one big envelope to the White House.

The dead line is June 30th, 2010.
Please mail letters to:
SJS Foundation
PO BOX 350333
Westminster, CO 80035-0333

Or email to:
sjsupport@aol.com
REF: Letter to the White House

Mystery Diagnosis
Airs SJS Story

In early September we received a call from a producer from True Entertainment. They were interested in reenacting a case of Stevens - Johnson syndrome. Many stories were submitted and to our surprise they chose Julie McCawley, we had been told they were looking for an adult. On October 21st we began filming. Itís amazing how much is involved in making a segment that will only last approximately 30 minutes. Early on a very cold and snowy morning we arrived at a Studio in Denver to film interviews. These would later be used to narrate different hospital scenes. Family and friends along with Dr. Bernard Cohen of Johns Hopkins and Lois Tyler (Retired Pediatric Nurse) volunteered their time to tell Julieís story. Lois is the actual nurse that saved Julieís life. Everyone from True Entertainment was great. They were very patient and worked very hard to pull it all together.

View full article: [PDF]

To view a slide show: [click here]

August is SJS Awareness Month

Once again itís that time of year where we start our letter writing campaign to all state, and global government officials. In the United States we ask that you help by writing to your local governorís office requesting a proclamation declaring

"August SJS Awareness month"

Hatís off to Helen Milne of the Ian Milne SJS Society for writing to the officials in British Columbia and Patricia Roberts of the United Kingdom. We can make this a worldwide achievement with the help of everyone. We have recently received proclamations for the following State, Colorado, Illinois, Nebraska & Maryland. A sample letter is available on the Stevens Johnson Syndrome Foundations Website at here.

The Truth behind Big Pharma
By Julie McCawley

We all need to take medicine at some time in our lives, but do we always really need these drugs? Global spending on prescription drugs topped over 646 billion dollars in 2006. Pharmaceutical companies spend approximately $19 Billion dollars on advertising. Pharmaceutical advertisements are on every station all day long, telling us to ask our doctor to prescribe this drug or that for whatever ails us. What happened to letting our doctors make a diagnosis before prescribing medications? While we need to be proactive in our healthcare there comes a time when we need to have input from our doctor.

View full article: [Word Document], [PDF]

SJS Foundation Honored at
Colorado State Capitol

On April 27, 2010 Colorado State Representative Cherylin Peniston presented the Stevens Johnson Syndrome Foundation with a tribute declaring August 2010 Stevens Johnson Syndrome Awareness Month. SJS/TEN survivor Julie McCawley was honored to open the 67th General Assembly by singing the National Anthem and her 10 year old sister Kerry McCawley led the pledge of Allegiance. We would like to thank Representative Peniston for her dedication in helping spread SJS Awareness in Colorado.

You can view the presentation at the following links:

  • [YouTube] - Julie & Kerry McCawley at the Colorado State Capitol
  • [YouTube] - Stevens Johnson Syndrome Foundation Tribute
  • To view the commendation for the SJS Foundation click here


    How you can help SJS Foundation?

    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.
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