Spotlight on: Greg Stephens, founder of the National CML Society
Active in the CML community: since January 2005
What do you do when you’re not raising awareness about CML? I enjoy biking, the outdoors, spending time with family and friends, and playing with my son, Tyler.
You were active in the CML community for some time during the course of your family’s journey with CML—what made you decide to start a non-profit?
The thoughts of starting a non-profit for CML began about a year into my family’s journey. I was in the consulting business and my mom was a Human Resources professional. As we sat in countless waiting rooms, we began to wonder if we’d ever run across another CMLer (as we say in the CML community when referring to other patients). We also began to realize the lack of ground-based services offered to our community. Don’t get me wrong, there are a variety of services provided by organizations that are truly wonderful, it was just that there were no similar services offered strictly for CML families.
In August of 2007, with our family still reeling from the loss of our mom, Carolyn, the work began. Over the course of her journey, my mom would keep copious notes on her treatment, the things she felt emotionally, and those things that she thought would be so nice to see in the CML community. When we began to form the organization (originally formed as Carolyn’s Hope), we went straight to those notes and began to brainstorm on ways to bring those thoughts to fruition in the community.
Carolyn’s journey affected the entire family, and the journey doesn’t really end when you lose someone. It simply takes on another dimension. The Society (formerly Carolyn’s Hope) was just a natural progression for our journey, which continues today.
What would you most want to say about CML to someone who doesn’t have experience with it?
This is NOT the diabetes of Cancer! One of the biggest dangers we see in our community, and the healthcare community for that matter, has been complacency.
With the advent of TKI therapy (tyrosine kinase inhibitors), drugs such as Gleevec, Sprycel, Tasigna, and others have taken a disease that once had a very short lifespan, and made it one that is highly treatable in most cases. Again, most cases. The danger comes when nonchalance finds its way into how we, as CML families, view the disease, and even more so when the community we rely on for care doesn’t see this as something that serious. Every person’s journey is unique and it has its own subtleties. Yes, there are the common things, but one person reacts totally different than another, as so on. As an organization, we want the public to know that CML, although highly treatable in today’s world, is still a very serious matter and needs to be addressed accordingly.
If you’re interested in starting a CMLConnection group in your area, you can get in touch with Greg and the National CML society here.
Interested in learning more about CML and other types of Leukemia? Join the WEGO Health Group.
Already active in the CML Community online? Learn more about our upcoming Insight Groups.