Rare Disease Awareness Day

Today was rare disease awareness day and we wanted to thank all those who helped promote and bring awareness to Batten Disease.  We emailed, twittered and Facebooked links to the fan page today and had many people that passed along the link. 

We also wore our jeans today to show our support.  Normally this would be a sign of wanting to be comfortable, but doing this as a family on a Sunday while going to church was a little unusual for us, as we always try to dress a little nicer when going to church. 

Because Batten is such a rare disease, little is being done for research and not enough funding is available.  Only by raising awareness can we hope for more funding for research which will lead to an eventual cure.  We have no doubts that a cure will be found for Batten Disease but we can only hope and have faith that it will be found before it is too late for Jacob and all the other Batten friends we have made.

Please continue to keep us in your prayers as well as increasing the public awareness of this horrible disease.  WE WILL BEAT THIS!