Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome
Foundation

 
     Newsletter
September, 2005

  
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First SJS Awareness 5k Walk/Run

The first SJS Awareness 5 K Walk/Run was held on August 13, 2005. With months of careful planning what could go wrong?

The day before the walk was a sunny, beautiful, Colorado day. Last minute errands were run including picking up water from Eldorado Water Company, renting a helium tank and purchasing balloons. We filled runner's bags with SJS fact sheets, homemade awareness ribbons made by survivors, SJS water bottles and snacks. We even worked until 1:00AM hanging banners around the park leaving 5 minutes of sleep before returning at 6:00am to set up the registration booth. [more]

For photo gallery of First SJS Awareness 5k Walk/Run [click here]


Support Group
Facilitator

Each day the Stevens Johnson Syndrome Foundation hears from people around the world. No one should go through the horror of Stevens Johnson Syndrome alone. We are currently in the process of looking for volunteer support group facilitators. If you would like to be a contact person for your area please complete the SJS Volunteer form: [click here]

Support group facilitator list will be available by state on the SJS Foundation website.

SJS AWARENESS SHOP

Over the past several years the Stevens Johnson Syndrome Foundation has received numerous requests for T-shirts, hats and pins. As a non profit organization with very limited funding we were unable to manufacture these products. We are very excited to announce the SJS Awareness Shop at: www.cafepress.com/sjsupport. You can shop online for SJS Survivor and SJS Awareness items. We have several different designs to choose from including the SJS Foundation Logo, Awareness ribbon, SJS Foundation mascot and SJS Survivor products. Cafepress makes the items for you so the foundation doesn't have to stock inventory. Your purchase is shipped directly to you and 25% of all purchases are donated to the SJS Foundation.

Thank you for your continued support!.

SJS Mascot

Stevie Johnson Seagull SJS Mascot The Stevens Johnson Syndrome Foundation would like to thank John Bilotta for designing our SJS Mascot. Stevie Johnson Seagull. John is a professional cartoonist and has done a fabulous job. This little mascot was printed on the front of the 5K walk/run shirts and was a big hit.

A Family History of SJS,
- By Joyce Breen

Our first child, Michael, was only eight months old in 1953 when we noticed a strange rash on his arm. When it seemed worse the next day we took him to the family doctor. After a brief check-up, the doctor suggested that we take him in to Children's Hospital in Milwaukee to see a pediatrician. He commented that Mike's condition was something he had never seen. [more]

Governors Issue Proclamations!

Governors across the USA this year issued proclamations declaring August Stevens Johnson Syndrome Awareness Month. We are pleased to announce Kentucky, Tennessee & Massachusetts joining the states of Colorado, Connecticut, Louisiana, Michigan, Nevada & Wisconsin...

We need your help. Please write to the Governor of your state for next year. Our goal is to get a National Proclamation issued by the President of the United States. Please ask them to send the proclamation to the
SJS Foundation
PO BOX 350333
Westminster, CO 80035-0333

For a template on key issues to be included in the wording of the proclamation please visit the following link: [here]

Your assistance is greatly appreciated.

From a loving mother for my angel
By, Lisa Jirak

Dakota was born September 19, 1995 in Las Vegas, Nevada at UMC Hospital. He weighed 6 pounds 8 ounces and was the most beautiful baby boy I have ever seen. I was told he was perfectly healthy. When we went to take him home I noticed something seemed to be wrong with him. He wouldn’t look at me when I talked to him. He didn’t move at all. So I took him to his doctor who said he was fine and give him some time. About an hour after we got home he had a grandmal seizure. I rushed him to the clinic in Mesquite and they told me to take him to the hospital in St. George. When we got there they gave him Phenobarbital and did a CAT scan. He started to get little red bumps like a heat rash. The doctors came in and told me he had septo-optic dysplasia [more]

SJS Awareness Booth 2005

This was our third year to participate at the Westminster Fair in Westminster, Colorado. There was a great deal of interest in Allergic Drug Reactions and many people stopped by to pick up an SJS fact sheet. We would like to thank the following volunteers for helping man the booth, Jeanne & Will Eggleston, Leslie Farrell, Amit Khatri, Dan McCawley and Jeanette Schnitzer. As always your help is appreciated.

Please [click here] to view the slide show from the fair:


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..!!

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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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