EB Awareness Week 2018

When we first created this blog Sam's grandma gave it the name "Sammy's waiting" relating to Samuel waiting for a cure. Although this is still true, there is no cure and we are desperately waiting, we are incredibly closer to a cure than when he was first born. Over the past several years there have been many new trials and studies in the works coming closer to an effective treatment or cure for EB. Thanks to organizations such as EBRP (EB Research Partnership) and Debra, awareness and fundraising may lead to a cure in Samuel's future. We are hopeful that he and others will know what it's like to live closer to a "normal" and pain-free life someday. 

Here are some highlights of 2018!