Spotlight: Greg Stephens, The National CML Society
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.
The National CML Society provides a great number of services to members of the CML community, can you talk about one or two of your most popular initiatives?
Our CMLConnection community has been much sought after and we are poised to launch groups in several metropolitan areas. One of the things that our family (and many others) experienced most was the inability to connect, face to face, with others on a CML journey. We made use of many online support groups and chat forums, but mom used to say, "If I could only sit down with a cup of coffee and talk with someone, hear their story, and compare notes."
Our groups work in such a way that each site features local activities and initiatives, and also shares a common program emphasis or educational opportunity with the other groups across the country. This way we can gain both local support, as well as a perspective on what others in the community are dealing with on a regional or local level.
Another service that is quite popular is support for caregivers and family. Many CMLers say over and over again that it is sometimes hard to see their family struggling with the journey. We work to help the entire family understand the subtleties of CML and how they can best function as a team. I've always said, “The journey involves the entire family.” When a "lightning bolt" diagnosis comes along, everything you and your family have known suddenly changes. Everything is now filtered through that paradigm we call CML. We are working on a variety of initiatives within this realm and look forward to announcing those to our community soon.
Some of the most precious times for me have been very simple things. For example, going with someone to an appointment to act as a second set of ears or sitting down with someone and hearing how they are not letting CML stand in the way of life. I even find great enjoyment in helping CML families find the answers to insurance issues or other things not directly CML-related.
Your organization is focused on ground-based initiatives, but you also have a prominent web presence and take advantage of social media tools like Facebook and Twitter—how do you find a balance between your offline and online work?
Finding a balance can sometimes be challenging. We try to ensure that our online presence accurately reflects what we are trying to accomplish on the ground.
For example, our CMLConnection groups will have online communities where members can carry on discussions from previous local meetings, as well as push that information up to the national level. Interaction between these local groups will facilitate the transfer of knowledge learned and experience gained from one group to another. We believe that knowledge is power and we hope that through our online presence, we can provide an avenue for others to plug in to our ground-based efforts. Additionally, we can be made aware of areas that might be particularly ready, or in need of additional ground-based programs.
When you think about the future of the kind of work you’re doing, what gives you a sense of hope?
I often say that I hope we can one day work ourselves out of a job. Of course, a cure is the answer to that. I would gladly change the purpose of our organization to being a historical society of a disease that once plagued humanity. Until then, I find hope in all the great advancements we are seeing, not only in our community, but for other cancers as well.
What’s been the biggest challenge for you in running the National CML Society?
One of the biggest challenges for me has been knowing how much is enough. I have a CML friend that from time to time puts up a hand and says TMI (too much information). I'm passionate about this work and I am sometimes guilty of trying to "fix" everything. I suppose it is just my nature. I'm sure others out there can relate, but I have a strong respect and deep felt compassion for anyone facing a CML journey. I'm driven to make sure that every person that faces this disease has the information they need to make an informed decision and to help alleviate the stresses, as much as possible, that come along with the diagnosis.
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.
How can people get involved with the National CML Society and support the work you’re doing?
There are a variety of ways to get involved. Of course, it goes without saying that financial contributions help us continue the work we do. We also have opportunities to volunteer for activities, distribute information to local cancer centers, and help us propagate our message across all parts of the country.
We are currently recruiting volunteer facilitator/coordinators for CMLConnection groups across the country. We hope to establish a minimum of one person in every state that acts as our "voice on the ground" so to speak. These positions are generally reserved for CMLers or those currently involved in some aspect of a CML journey, whether that’s as a family member, doctor, or nurse.
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.
Be sure to check out Greg's WEGO Health Profile and welcome him to the community!
Already active in the CML Community online? Learn more about our upcoming Insight Groups.
-
Comment by epatientGR on October 14, 2010 at 6:20pm -
Hi Greg,
Congratulations on being featured? Heard from Jan Geissler you had a great congress.
Regards
Kathi Apostolidis
Comment
© 2012 Created by Susan M..
You need to be a member of WEGO Health to add comments!
Join WEGO Health