He was known as Adventures of a Funky Heart or @funkyheart on Twitter. He was an advocate to the max, and lived his life for Congential Heart Defect awareness. I followed him as he lobbied in Washington for CHD's and he wrote precious blogs on my Gabriella when she was transplanted HERE and HERE. He has been a great internet friend support for over a year now to me. He always had a very calm and confident answer to anything hearts, and though his heart was imperfect he wore it on his sleeve as if it were made of Gold.
I felt like he fought for not only all children with CHD's but also for my Gabriella individually. There was something so personal about my interaction with Steve and the compassion he had for people living with a CHD. He also helped me feel pride in being a heart mom by his encouragement and perspective as an adult CHD survivor.
This is a eye opening reminder that CHD's are never cured, they are just patched. We must fight harder for a cure so our children can grow old and not fear an untimely death in their teens, 20's or middle-aged years.
Steve will be missed... but his legacy will remain in the lives he has helped change over his years advocating and fighting!
Added: a video of Steve at a Symposium in 2009 http://vimeo.com/6104553