Reaching Beyond the Clouds

We are going to the Grand Canyon. It has always been on our smaller bucket list and two bunks opened up at Phantom Ranch – so we leave in the morning.

There are 15 rare diseases that fall into the category of vasculitis (inflammation of the blood vessels). Today (the 3rd anniversary of my diagnosis) Larry, Teshia, and I went to the 2010 Vasculitis Symposium where I was the Motivational Speaker. As it turns got I was very inspired by the room filled with the hundreds of people attending this event. On Friday I had a meeting with the speakers’ coordinator, Dianne. I had asked to see the room where I would be speaking so I could get an idea of the set-up. At the time where was a meeting in-session. I asked what the session was: it was the group discussion on Wegener’s – the disease I have. I was amazed by how many people where in the room: maybe 100. I had never met one other person with WG. WOW!

Today I had the pleasure of speaking at the Vasculitis Foundation’s 2010 Symposium. I may have been there to give the Motivational Presentation but found myself inspired by the hundreds of people that filled the room. Doctors, researchers, patients and their family-members all representing some aspect of the 15 rare diseases that fall into the vasculitis family.  

Joyce Kullman, Excutive Director of the Vasculitis Founadation.