Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome
Foundation

 
     Newsletter
October, 2011

  
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Governors Declare August SJS Awareness Month!

This year we received 10 proclamations declaring August 2011 Stevens Johnson Syndrome Awareness month. We will continue to write every year and eventually it is our hope that all 50 states will join us. We can't do it without your help. More states are requiring that a local resident make the request. The SJS Foundation would like to thank the following people for their participation in this yearís awareness project:

  • Jessie Upshaw - Georgia
  • Tara Stepanian of the Boston Foundation for Sight - Massachusetts
  • Jill Kleeman - Maryland
  • Becki Conway - Michigan
  • Carrie Moore - New Jersey
  • Nicole Chapman - Oregon
  • Vicki Lown - South Carolina

We would also like to say a special thank you to John Hornberger of Pennsylvania. John worked diligently for months trying to convince his governorís office to issue a proclamation. Even after they called him and said we donít issue proclamations we only do resolutions John did not give up. He said "Then give us a resolution!" John called and emailed their office several times a week but his pleas continually fell on deaf ears. But John did not go away! He even told them, "You better find out about Stevens - Johnson Syndrome before it finds someone you love!" He was determined, and even though he did not get a proclamation, he did get the word out about SJS to the people of Pennsylvania. He called a local newspaper and was interviewed! Thank you John, you are awesome! You can read his story at here

UPDATE: John Hornberger never gave up and on September 28, 2011 he received a message from the General Assembly of Pennsylvania. Adopted, Sept. 27, 2011 with a vote of 199 to 0 the state of Pennsylvania adopted a resolution naming October 2011 Stevens - Johnson Syndrome Awareness month! It may not be August but we'll take it! Awesome job John! Thank you so much, your hard work has paid off. [SJS Awareness resolution]

To view the 2011 proclamations please click here


SJS Awareness Walk

Thank you to everyone that participated in the Stevens - Johnson Syndrome Awareness walk on August 13th, 2011. The walk was held at Lake Arbor Park in Arvada, Colorado. It was a beautiful sunny warm day. Each person that participated in the event also carried a placard and walked in honor or memory of an SJS victim. At the end of the day we tied the placards to balloons and launched then into the sky.

We hope you enjoy this slideshow of the walk: [click here]

View full article: [PDF]

SJS KIDS WEEK AT BFS

The Boston Foundation for Sight hosted their second annual BFS SJS Kids Week during the last week of July. This special event brought children together from across the United States and Mexico that suffer ocular damage from Stevens -Johnson Syndrome. The kids and their parents had a wonderful time which included swimming, mini golf, dinners and Halloween in August!

View full article: [PDF]

Stand Up Against Bullying!

Please join Julie McCoart McCawley and stand up against bullying by taking the pledge! Let's stop this behavior. Too many kids are being bullied and a lot of them are our SJS kids! Let's stand together and stand up to bullying! http://www.standtogether.tv/

View full article: [PDF]

SJS in the news!

Stevens - Johnson Syndrome has been in the news quite a bit lately. It makes one wonder if SJS really that rare? To catch up on the latest SJS news please click on the following articles:

  • Zach Hooper [click here]
  • Fox Cities Marathon - Kendra Schmidt [click here]
  • Blind mother seeing [click here]
  • Fatal Mistake [click here]
  • Rare Allergy led to PTSD [click here]
  • Raising Awareness [click here]
  • Teenager nearly dies after rare allergic reaction to EYE DROPS [click here]

  • How you can help SJS Foundation?

    Due to the economy the Stevens-Johnson Syndrome Foundation has been struggling to survive. We have been continually turned down for grants and corporate donations. Many people have requested car magnets and wrist bands but unfortunately we are unable to purchase these products. We hope you will remember the SJS Foundation when you are doing your end of year donations. Your donation is tax deductible and very much appreciated and will help us to continue to be here for you!

    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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