Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.
Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.
I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.
Can you let me have the actually name of the Facebook page? I cant seem to locate in on Facebook. Thanks. Hope you’re doing well.
Joyce, I amended the blog and put a link up top. Just ask for permission to join and one of the moderators will get back to you 🙂
This is just beautiful!
Thank you 🙂
Linnea, what is the date of your most recent post? Assuming you have been busy. Was just thinking of your blog, and wanted to check in!
Hey Kristen—last August! I really need to get with it. Fortunately it is only good reasons that have kept me from my blog but I promise to update soon! xo
Was just thinking of you! And hoping you were doing well. 🙂