We learned about a really important website for all clinical trials going on in the world...www.clinicaltrials.gov.  Not only does it give you the current trials but you can also filter it to see if the trials are recruiting new patients.  

The genetic counselor said CADASIL doesn't have a lot of genetic studies but she is hopeful within at least two generations from Lory, there will be a cure.

We learned that the best way to not pass on this gene, is for future generations to do IVF where they test the embryos and only implant those that don't have the Notch 3 gene.  The Notch 3 gene effects the integrity of the blood vessels.

Coming to Mayo has been a wonderful experience for Lory.  We weren't really sure what they could do for her but we have learned so much about her disease and have hope that the new medications she will try will help slow the progression of the disease.  If Chik-Fil-A is the gold standard of fast food, then Mayo is the gold standard of health care.  The clinicians have all been kind, compassionate, and work as a team (putting their egos to the side) to find the best treatment for their patients.  The system is run like a fine oiled machine (her blood work came back in an HOUR)!  Lory and I especially savored their current weather...no wind and cooler temps!  We are about to leave our hotel to drive back to Minneapolis for or 4:00 flight.  Thank you all for praying and cheering for our girl!  She is surrounded by so many people that love her!!