Tag: Kidney Advocacy Committee

A Cold But Successful Kidney Walk

This weekend my husband (Neil), son (Paul, my recipient), and I participated in our umpteenth National Kidney Foundation Triangle Kidney Walk [see my post on our long history of kidney walks], in Durham, NC. We were thrilled to learn that it set a record for donations: more than $97,000, with money still coming in. I think it broke another record, too–this may have been the coldest one (I know it’s the only time I’ve ever worn a winter coat over my Kidney Walk tee shirt).

Because of the damp chilly weather, the Walk organizers decided to shorten the route. What was supposed to be a 2.4-mile loop was reduced to just 1 mile total. True, my fingers were numb even before it was over, but we were still a bit disappointed.

It was long enough though to fall into conversation with a woman doing her first Walk. She’d driven all the way from the Pinehurst area because her mother had died recently from kidney failure, and she felt she had to do something. Like so many of us, she’d known very little about kidney disease before her mother started dialysis 4 years before. A few family members had planned to come along, she said with a little annoyance, but one by one they’d backed out. To her credit she came alone.

We talked about how little is known about kidney disease and how important it is to focus more attention on education in addition to research. We learned a startling statistic before the walk started: the U.S. National Institutes of Health, which is the main source of health-related research in this country, spends $568 per patient/year on cancer research. Kidney disease research accounts for…$29 per patient/year! I thought I’d heard it wrong and had to double-check before finalizing this post. And yet chronic kidney disease affects more than 30 million Americans. It’s yet another reminder of how important that new public awareness campaign is [see my previous post].

We saw lots of familiar smiling faces at the walk, many peering out from under wool hats. Friends from Donate Life NC/WELD (Women Encouraging Living Donation) were working a table this year. One of them, Dolores McGrath, a fellow NKF Kidney Advocacy Committee member, would be joining me for my first “official” visit to the state legislature this week. (More on that in my next post!)

That’s Dolores McGrath, center; and Deanna Kerrigan, Donate Life NC/WELD director, right.

A Donation Advocate by Any Other Name

Funny how things take on a life of their own. Less than 3 years ago when I was interviewed at length on “Your Health” radio show and asked to tell my story about donating a kidney to my son in 2006, I was a bit uncomfortable with their description of me as an advocate for living organ donation. Yes, I was passionate about the subject, never passed up an opportunity to talk about it, and was writing a book on living kidney donation, with a live-donor-kidney recipient (Betsy Crais). I’d also written a couple of op-ed pieces, but “advocate” sounded much more significant (and certainly impressive) than whatever I was doing in my own little ways.

But then I ventured out a bit and spoke at a rotary club and a couple of patient workshops. I started writing blog posts sharing my story. I began to use Twitter and Facebook to talk more generally about the 30 million Americans with chronic kidney disease and the dire need for donors—live and dead. So when two local TV news stations interviewed Betsy and me last year about our book in progress and referred to us as advocates, that time the label felt right.

And now the National Kidney Foundation has made it official, inviting me to join its nearly 200 Kidney Advocacy Committee members nationwide. The NKF advocates can

bring the patient/family voice to NKF’s legislative priorities

serve on panels and in conferences hosted by various government agencies….

I am honored and deeply humbled to join the ranks of “donation advocates.” There’s work to be done.