Friday, October 25, 2013

National EB Awareness Week

In 2006, the U.S. Senate and Congress declared that the last week of October would become the National Epidermolysis Bullosa Awareness Week.  The purpose in setting this week aside was to:

  • Support the goals and ideals of EB awareness week 
  • Raise public awareness and understanding of EB.
  • Recognize the need for a cure
  • Encourage people to support the week through ceremonies and activities to promote awareness
  • Foster an understanding of the impact the disorder has on patients and their families
To help you better understand the impact of EB, I would like to share the following video with you.  In it you will see many of AJ's friends that battle EB and those that have not survived the disorder.

We are also excited to share the first children's book, that was recently published, about EB.  In honor of EB we will be donating the book to AJ's elementary school.

Thank you again for the support you provide us.  We are thankful that God has brought AJ into our family and that He has shown us, as the song describes,  

Blessings in Disguise.

I'll close with a picture of our little (Big) blessing.  Maybe someday he will be the doctor instead of the patient.  


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