Update!

It's been an eventful and positive few months since summer! Ian has successfully transitioned to his new middle school and is absolutely loving it. The Urticaric episodes seem to be under control and we are looking forward to Christmas.

We are moving forward with our research into systemic treatments addressing the devastating sequelae to Stevens Johnson Syndrome, but we are totally excited that we now have a definitive plan regarding the new ocular surface device and are looking forward to presenting it to the medical community in 2012. For the moment though, we are planning Ian's next trip to the Boston Foundation for Sight in March 2012 and our fundraising has begun in earnest.

In the meantime please support the International Stevens Johnson Syndrome Foundation as they need your signature on their petition to establish a mandatory reporting system for all adverse reactions to medication.

SJS Awareness month / SJS Kids Week 2011

We want to send lots of hugs and best wishes to the staff and patients at the Boston Foundation for Sight as they host their second annual SJS Kids Week from July 29 - August 5. 2011. Unfortunately Ian has recently been diagnosed with Autoimmune Uticaria, which is making his day to day life pretty miserable and he is unable to travel. We are investigating the possibility that this is a potential issue caused by his SJS in 2001, and hope to have some answers soon. So far this year Ian has been unable to attend school, but finally we are working with an immunologist who is trying several approaches in order to bring the uticaria under control....As soon as we find something that works we will let you know.

Meanwhile, we also send our best wishes to everyone at the Stevens Johnson Syndrome Foundation as they host their walk in support of research and awareness on August 13. 2011. Please visit www.sjsupport.org for more details.