Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome
Foundation

 
     Newsletter
May, 2011

  
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Awareness Proclamations

Once again itís that time of year when we ask for your help. August is Stevens Ė Johnson Syndrome Awareness month and we are hoping to get as many states to recognize the warning signs of SJS. Wonít you please help by writing to your local governor requesting a proclamation? More states now require a request from a resident. Letís get SJS out in the open and save lives! No one should find out about SJS/TEN the way that we all have. You can make a difference by educating your state officials. Please check you state requirements as some now require online requests.

A sample letter can be found at: [click here]


Congratulations
Julie McCawley

I canít believe how fast the time has gone by; it seems like just yesterday I held her in my arms for the first time, her little round face looking up at me with big blue eyes and curly dark blond hair. 17 years later my daughter has grown into a beautiful strong compassionate young woman. I think back to August 1994 as I watched Julie struggle to survive the ravages of Stevens - Johnson Syndrome (TEN). She has come so far and faced much adversity along the way and through it all she has persevered.

As I look at her in her cap and gown it brings tears to my eyes. Julie says with a laugh "oh Mommy are you crying again?" A wonderful daughter, and great big sister to her little sister Kerry, they sing continually. Not surprising Julie plans to become an elementary school music teacher. We are so proud of you!

Boston Foundation For Sight!

If you suffer ocular damage including dry eye syndrome and photophobia you may be a candidate for the PROSE device (Prosthetic replacement of the ocular surface ecosystem). The Boston Foundation for Sight (BFS) has been restoring lives to Stevens - Johnson syndrome Patients since 1993. Many SJS/TEN patients have told us their eye pain was immediately gone, or their photophobia was reduced by 75%. Others were able to see clearly after years of legal blindness. The staff at the Boston Foundation for Sight are wonderful. Their dedication and compassion go above and beyond and you will leave with new lifelong friendships. BFS For detailed information about PROSE please click here.

New TENS story AIRS ON
Mystery Diagnosis!

TEN survivor, Lindsay Estacioís story aired on Mystery Diagnosis on the Oprah Winfrey Network, Wednesday June 1th! It should re-air. Please check your local provider for times in your area for reruns of the show. Thanks Lindsay!

Congratulations
Seth OíNeill
By, Cheri OíNeill

We are pleased to announce that Seth O'Neill has graduated from DLHS. Seth was homeschooled until the 7th grade when he entered public school. He has been successfully taking college courses his Jr. and Sr. Year and will be able to take 36 College Credits with him this fall. Seth was introduced to this amazing support group after suffering from SJS in July of 2008. Since then he has gone on to appreciate each day and live it to the fullest. He has felt a calling in to the ministry and will continue his studies at Crown College near Mpls. MN to major in Communications and Ministry. Seth has spent his free time volunteering at a Young Life Camp and will spend a month in MI this summer working at a YL Camp before he goes off to College in the fall. His dream would is to be a director at a Young Life Camp and travel the world to meet other SJS Survivors.

Thank you for your support!

TEN survivor, Kendra Schmidt is once again putting together her TEAM SJS! They will be running and walking in the Fox Cities Ĺ Marathon to promote awareness of SJS/TEN! You can follow Kendraís progress at here.
Thank you Kendra for all your hard work and support.

Nicole Chapman suffered from SJS at 6 years old. She has since made it her mission to raise SJS Awareness. Now a young woman Nicole I s an amazing seamstress! She sewed and raffled off a beautiful original SJS awareness quilt and also raised awareness and funds for the SJS Foundation at a local car show.
Thank you Nicole! You are awesome!

Parents of SJS Kids

Make sure that your student has the tools available to them for the following school year. Your child may be entitled to an Individual Education Plan. (IEP) or 504 Plan This should be arranged immediately at the beginning of the new school year.

View full article: [PDF]


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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