What does it mean to live a rare life?
Let's discover the answer to that important question together.
How would you describe your life? Is it routine? Mundane? Do you find yourself living a “normal” life that looks the same as everyone around you?
Or is your life out of the ordinary? Maybe even extraordinary? Would you describe your life as being rare in terms of the richness you enjoy in relationships, personal achievement, career accomplishments and growth?
Living a rare life takes focus. It requires us to be intentional about how we spend our time and our energy. Above all, it calls us to envision and plan for the life we truly want to live.
We can’t do it alone. Live Life Rare is an email newsletter that's the core of a community we are building, a group of people who will not settle for mediocre but instead want the tools, encouragement and support to build something beautiful from the finite time we are given on this earth.
This newsletter was launched by Stephen V. Smith as a way to discuss these ideas with the rare disease community. Himself living with a rare disease since 2014, Stephen grew to understand the challenges millions of people face each day:
coping with physical limitations
dealing with those who dismiss their sometimes “invisible” conditions
navigating the health care system
struggling to balance caring for themselves with caring for loved ones
trying to find work that is sustaining while also meaningful and fulfilling
In creating the plan for this publication, Stephen realized that the desire to live a rare life goes beyond those impacted by a rare disease. The desire to create a better today, while forging a better tomorrow, burns within all of us. “As a lifelong learner, I'm infinitely curious about how intentional personal growth can help us build the future we want for ourselves and our families,” says Stephen. “I believe that’s something many of us share.”
What We Will Learn Together
Subscribe to Live Life Rare and join us on this journey. Together we will:
Build a community of people with shared goals and dreams
Experience personal growth
Unleash our creativity
Support and encourage one another and our families
Learn from each other how to live life rare
Stephen V. Smith is an ICU survivor who lives with the rare disease myasthenia gravis. Following an award-winning career as a newspaper journalist, Stephen founded a small communications firm alongside his wife in 1996. Taking that company from a spare bedroom to the Inc. 5000 list, the Smiths sold it to a strategic acquirer in the middle of a pandemic. “I believe that to live life rare has more than one meaning,” Stephen says. “It’s not just about the big wins ... it’s also about the small decisions we make every day to face our challenges, choose the better path, and look for the positive in all situations.”