It wouldn't be appropriate to update my blog and not mention Blake's Purpose since at the moment I am eating, breathing and sleeping this foundation. Our big golf tournament is next Friday and I seriously cannot wait. We have hosted this tournament two times before and each one was a huge success, raising over $600,000. Due to the crummy economy and Blake's parents going through a divorce we didn't put it on last year and so I feel like I am more than ready for this years event. This year we have a ton of stuff planned for the golfers; fantastic food on the course throughout the day, fabulous cars on all of the hole in ones, a great tournament planned and a fun evening with David Garibaldi. We even have a few pro athletes attending this years event which will be really fun! Now all that I am hoping for is the weather to hold out for me!Right after the tournament we are leaving for Washington DC to attend a conference at the NIH focusing on Late Infantile NCL, this is the first time that we have ever gotten researchers from across the US, representatives from the NIH, FDA and large pharmaceutical companies in a room to hold a conference specifically on research and treatment for LINCL. This is such a huge step for all of us working with this disease and I know that myself as well as all of the other families/organizations that are helping to put it on could not be more excited!
