I have been a member of a local CLL specific support group in Orange County, CA that I help found with three other CLL patients since its inception in 2006.
Two of us founders are still very active members, meeting once a month, but sadly one has passed on from complications of his hematopoietic stem cell transplant and one was cured with her transplant and moved on.
Now over twenty of the fifty plus on our mailing list show up on the second Tuesday of every month to share the ups and downs and the latest information that is specific to living with CLL.
A lot of communal wisdom around the table.
And support and local knowledge about providers and facilities.
As discussed in Putting Together a CLL Team Introduction and Putting Together a CLL Team Spreadsheet, there are proven benefits to having the right members of your team.
A support group, either online or live, is a critical piece of that team.
There are already several great online CLL communities (ACOR, [email protected], CLLSA and others) so the CLL Society Inc. will not be adding another Internet list serve, but instead we provided some links.
On the other hand, we do have some very specific plans to help build and support new local CLL support groups.
Please let us know if you are interested in joining or helping form such a group.
Here is Cookie, one of the newest members of our local Orange County support group. You might recognize her from our Welcome Video.
Brian Koffman 3/8/15 with help from Cookie