I’ve been on the road with Julia for four weeks now and it’s time to offer an update of our journey. We’ve been having a wonderful time meeting families in Florida, Mississippi, and Texas. Today, we’ll be attending a get together in Phoenix that should be attended by a dozen people.
Our meetings have been powerful. For some people, this is the first time they’ve ever met anyone else with the illness. In Mississippi, we even brought together family members that had never met! The get togethers have given folks a chance to share stories, compare doctors, and discuss the future. Some people are planning to organize other events including fundraisers in their areas. Everyone has left committed to joining our patient registry and to encouraging affected family members to register (www.angioma.org/registry). Below are some pictures from the trip:
More pictures to come as the trip continues. After Phoenix, we’ll be in Bakersfield on February 25th, Pasadena on March 10th, and in the San Francisco area on March 18th. Look for the entire itinerary at www.angioma.org/roadtrip.
See you soon!