In late 2016, after the American Society of Hematology annual meeting, the CLL Society in conjunction with City of Hope (COH) and the local Leukemia and Lymphoma Society (LLS) put on an educational forum to bring the local CLL patient community up to date on the latest news and research.
One of the speakers was Stephen Feldman who facilitates the monthly CLL support group at COH. He shared his experience as a new facilitator, as well as what he derives personally from the meetings.
There is much that we can do through our website and we can certainly reach more people with less resources through the internet, but speaking from my personal experience, there is nothing that can replace the peer-to-peer, face-to-face power of a patient-led, CLL specific support and educational group for patients and caregivers.
Our group in Orange County, California started 10 years ago with three of us meeting in our living rooms. Now we meet at University of California in Irvine with over 100 on our mailing list and usually two dozen or so at each monthly meeting.
I share this to encourage you to consider getting our help in making a CLL support group part of your future. We know what works and what doesn’t and what are the necessary parameters to run a successful meeting. We have all the tools, the resources and the training that you need to launch and maintain a robust and helpful CLL support group.
Please reach out to us
Check out the banner on the home page of our website https://cllsociety.org where we list links to surveys to gather patient preference for the meeting days/times/frequency in several cities where we are hoping to launch new groups in the first half of 2017.
If you have any interest in joining a CLL-specific support and education group and your city isn’t listed, please email us at [email protected]. We are open to looking to other regions if there is the need and it has the critical mass to make it possible.
All the information about the meeting details of ours and other established group can be found here: https://cllsociety.org/events/
We also have new groups recently started in Charlotte and Tampa.
Please enjoy my brief conversation with Stephen Feldman
Medical Director, CLL Society