Families as Faculty Program

We had our first visit as participants in the Families as Faculty Program today and it was pretty cool. Basically, strangely configured and intensely needy families like ours get to host medical students to talk about our experiences with the medical community, good and bad, and how we have survived. And, as many of you know, there is not enough time in the world for us, let alone any other special needs families, to talk about our experiences. We are an E N D L E S S supply of information and opinions about the medical community. As Family as Faculty participants we have hopefully joined the ranks of those that influence the next movers and shakers of the medical community.

Today's visitors were soon-to-be 4th year medical students from the University of MD interested in Neuro Surgery and Neurology - so they're interests are more closely aligned with our Spinal Muscular Atrophy (SMA) ridden, neuro-centered world than some other diseases they might see - But with a Pulmonary-focused treat that they may have not expected. We live for adequate Oxygen exchange -- it RULES!! Atelectasis = BAD!!

We gave an unexhausted account of our life with SMA and tried to focus on what we have learned - and also what we feel characterizes a "good" doctor. I am sure they're heads were spinning. We often get the question, "do you guys have any medical background?" which is always fun - ok, selfishly it makes us (me) feel really smart. :)

Anyway, it was a good meeting and we look forward to hosting more students. Whenever we get one-on-one time with younger doctors it is fun for us to see them learning. Gotta run.

Peace <><