Winging It on Capitol Hill But Flying High

Participating in kidney advocacy summits in Washington, DC–whether for the National Kidney Foundation or American Kidney Fund–is always fun and gratifying, some years more than others. This month’s NKF Kidney Patient Summit was a bit different in its unpredictability.

Our stalwart North Carolina team–Alan Levy, Dre Roundtree, and wife Necole (a de facto member), pictured below– had to wing it for the most part. Legislative meeting schedules are always subject to last-minute changes, both cancellations and confirmations. So we weren’t surprised to see that two of our three meetings were still listed as TBD, plus one information drop-off, when we arrived in DC. When the morning of the Summit arrived, though, all we had scheduled was one sit-down meeting.

Fortunately, it was a very good one, at the office of my congresswoman (Valerie Foushee, NC-04), a longtime supporter of the kidney community. Her legislative director, Sarah Izaak (the person not wearing an orange NKF shirt, above) was well informed and very engaged.

But only one meeting?

We didn’t come all the way to our nation’s capital just to catch up with advocate friends from previous summits, enjoyable though that always is.

So we got a list of NC legislators, split them up, and grabbed a pile of information packets to leave with our representatives. At the very least we could provide info that they wouldn’t have received otherwise–along with the personal touch of a hand delivery.

At best, maybe we’d score an impromptu meeting, albeit with an unpredictable reception.

I hit the jackpot! Not only did I manage a discussion with staffers for all four on my list: Reps. Deborah Ross, Don Davis, Addison McDowell, and Pat Harrigan, but they were all thoroughly interested and engaged. I even had photos taken at all but Harrigan’s office. (It was the first on the list, and I was so excited at my good fortune that I completely forgot to ask to take a photo.)

Left to right: with Isabella Montini, legislative fellow; with Zoey Young, scheduler/exec assistant; with Rune Moore, legislative director. Camera shy: in Rep. Harrigan’s office, I spoke with Tom Rigali, senior legislative assistant, and Milka Jurado, director of operations.

The Patient Summit Reception, always held the evening before we head off to meetings, is always memorable. This year NKF honored two advocates: my teammate, Alan Levy, won the prestigious Richard K. Salick Patient Advocacy Award. Alan was gracious enough to acknowledge the support of fellow advocate Thelma Barber and me in his speech (she and I both teared up). We got a pic of the three of us.

A new award, the Kidney Champion Award, went to NFL player Khalen Saunders, founder of the Original Element Foundation.

Khalen, who uses his platform to support important causes, has done public service announcements for NKF to spread awareness about kidney disease. In his acceptance speech, he movingly described his mother’s struggle with kidney disease and the dramatic difference that her transplant made. (Kim Hamilton, his mother, stood nearby.) Among the lines in his speech that stayed with me: “Strength isn’t about lifting weights,” he said. “Strength is sitting in a dialysis chair and not giving up…”