If you've been reading the Angioma Alliance website/blog and newsletters, you know there was a big change this year. Connie Lee, the Alliance founder and President has transitioned to the role of Ambassador/Founder and a Program Coordinator position.
What does this mean? Well, what I'm most excited about is that she and her twelve year old daughter Julia are launching a six-month road trip on January 21st to raise awareness of the disease and encourage enrollment in the Patient Registry.
They're going to be heading to Boston come August. Holding my breath we'll get to meet up with them...ironically enough, we're supposed to be heading down south that month...ARGH.
Meanwhile. Check out the registry and tissue bank here. Watch the road trip adventures here. And get the itinerary here.