Life has been extremely busy for all of us. Brisan and Parker have been attending summer school a few days a week now and should be down soon. Duncan has been really growing up. He will be a peer model coming next month at school! Jennifer has been plugging away at school!
The Niemann-Pick Disease Family and Medical Conference will be held here in a few weeks in Norfolk, VA. We are very excited to be attending to meet a lot of the families and researchers face to face. These diffidently will be friendships that will last a lifetime! Even more importantly we can here first hand on what is taking place so we can share with all of you!
Over the course of the next few months we will be holding events through our 501(c)3 non profit Niemann-Pick Children's Fund. These events will go to benefit a range of things related to Niemann-Pick Type C. Still in planning but realistically on there way of taking place!
Overall life has been pretty good as Brisan and Parker have been stable. Still a lot of throwing up from Parker but if that is the worse thing right now…we will take it. Thank you for all your support and prayers. Hopefully we can get some updated pictures and videos up soon for all of you!