Well, actually Miss Murrary (our neice Ella) lives in Washington, so she didn’t have to travel far to attend a special panel at the U.S. Senate on rare and neglected pediatric diseases, such as EB. The purpose of this panel was to urge lawmakers to help fund research relating to these diseases, and Alex Silver spoke on behalf of EB children and their families. His testimony is embedded below, or you can watch the full committee hearing (Mr. Silver’s portion goes from about the 103-108 minute mark). The video below contains a couple of shots of Ella with my sister Katie.
We are so grateful for the opportunity to have Mr. Silver speak before the Senate about this devastating disease. Only when there is more awareness about its effects and what life is like for EB families will there be more funding put toward researching more effective treatments and ultimately, a cure. Please pass this on to other people you know, and if you would like to know more about EB and getting involved, you can visit debRA. You can read my sister’s first hand account on her blog: teamjoella.blogspot.com.
