Notes from the Road #1

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 (  Below are some pictures from the trip:

The road trip begins with Charlie and Charlise, the Traveling Cavernous Angioma Awareness Bears

Julia visits with Ethan and Evan in St. Augustine.

Julia presents AJ Buscemi with Charlie the Bear in Tampa, Florida.

Cousins Melessia Bass (2nd from left) and Jerry Bowlin (2nd from right) meet for the first time in Kiln, MS.

Diana George and Jo Macaluso give hugs in Austin, TX.

Some of our friends in Houston: Diana Rodionov, Julia and Connie, Delia Barney, and Julien Bruce

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

See you soon!





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