Why I Believe in Living a Rare Life
Ten years ago, I did what few patients do — I walked upright, of my own volition, into the neuro intensive care unit of a Birmingham hospital.
Live Life Rare
Stories and resources to help you discover and pursue your rare life
Dormant Last read · last published · next check
Read 1 day ago and current, but nothing has been published for 18 months.
Latest posts
What, A Decade?
My life completely changed 10 years ago - for better AND for worse
What If It All Goes Right?
Making decisions through the eyes of an optimist
Rethinking the Wind
“And the wind that blows the candles out, well it also fans the flame”
A Great Start to a Big Rare Week
I began this week hiking to a marvel of nature. I’ll end this week on the surgeon’s table.
My Interview With Wes Michael of Rare Patient Voice
The group connects patients and caregivers with the opportunity to voice their opinions and contribute to the rare disease community — and beyond
Your Story Is Not Just Yours
There’s a greater community waiting to learn from what you’ve been through
Now You Can Listen
The Live Life Rare podcast brings you insight in audio format
Learning, Walking, and Teaching
Three key roles we need to live a rare life
Presence Over Presents
Focused attention is the best birthday gift of all