What was a little disappointing: the Walk included no mention of the need for bone marrow/stem cell donors, and there is no coordination with the National Marrow Donor program folks, it appears. I am lucky enough to have one or two potential donors, but others are not so lucky and end up dying. I met a great little girl on the Walk who'd found a donor, had a transplant and is doing well years later.

it's surprising to me how many people involved in the walks/this issue don't know much about the need for bone marrow/stem cell donors. I wore a t-shirt promoting this, and had a number of people come up to me and talk about it. I recognize that reserach and patient services is the main mission of the Society, and they don't want to have mission creep. HOWEVER, I really feel at the Walk at least there should be SOME mention of the need for donors, or at least a booth or mention in the program...there should be SOME coordination with the National Marrow Donor folks. After all, what better service to patients as part of the Society's mission than helping to promote, in a small way, the need for donors---to an audience that would seem to care about this issue. At the very least, during November's National Marrow Awareness month the Society should encourage folks to sign up on their website.

I met a woman from California at the walk whose sister had died ---didn't have a donor --and she told me both orgs had asssured here there would be someone at a booth registering donors or providing info, but there wasn't anyone. She said the California LIGHT THE nIGHT walks she'd been on were much better about working together to help patients and mentioning the need for donors. She also said apparently in DC there was someone from the Donor program there last year, although no one knew b/c they were in a building and no one could find them. I was on the walk last year and had no idea there was anyone there.

This silo mentality hurts patients I believe.