Help Make August SJS Awareness Month in Your State

SJS ribbonAs many in our BFS community know, Stevens Johnson Syndrome (SJS) can be a devastating diagnosis with lifelong consequences. Jean McCawley, founder of the Stevens Johnson Syndrome Foundation, knows this firsthand as she held vigil beside her young daughter Julie’s hospital bedside during her struggle to recover from Stevens Johnson Syndrome. Alone and afraid, Jean was unable to find information or support during those early days. She vowed that no parent should have to face this devastating illness without help and has devoted herself to educating, supporting, and advocating for patients and families who have been touched by Stevens Johnson Syndrome.

Early diagnosis and treatment are the keys to surviving and minimizing the long-term effects from Stevens Johnson Syndrome. Jean McCawley has been lobbying governors across the nation to proclaim August as Stevens Johnson Syndrome Awareness Month in an effort to educate others about this devastating disorder.  Now, she needs your help to further this cause.

With just a little bit of your time, you can make a tremendous impact in promoting awareness about SJS. The process of obtaining a proclamation is fairly simple but does require a yearly request by a state resident as proclamations are issued annually by each state and do not automatically renew.

Here’s how you can help:

  • Contact the SJS Foundation and let them know you would like to take the lead or participate in securing your state’s SJS awareness proclamation.
  • Locate contact information for your state’s governor. A good source is the National Governors Association. Your state’s website or governor’s office can provide specific information on the proclamation process.
  • Write a letter to your governor requesting the proclamation. You may use the sample letter from the SJS Foundation or draft your own. Be sure to include accurate information about SJS or enclose a fact sheet printed from the SJS Foundation website. You might want to share your personal experience with SJS as well.
  • Follow-up with a phone call to ensure your request was received and to check on its status.
  • If possible, make arrangements to pick up the proclamation in person to allow for publicity photographs or contact your local media to let them know about the proclamation.
  • Be sure to write a thank you note to the governor and any local representatives involved in helping secure the proclamation.
  • Celebrate your success by sharing your news with our BFS community and the SJS Foundation!

BFS is taking the lead in securing a proclamation for Massachusetts. Won’t you please take the time to represent your state in this very important effort? Imagine spreading the word about SJS across all 50 states. Together, we really can make a difference.