When surveyed about “the best part” of a kidney summit, I almost always find myself replying “my interactions with other advocates”: meeting new ones, finally meeting in person the individuals whom I knew only online but already considered friends, and of course seeing familiar faces from previous summits and events.

My after-summit posts usually focus on our legislative meetings (such as at the National Kidney Foundation summit in February). At the recent AKF summit in May I was fortunate to meet again with Natalia Brama for North Carolina Senator Ted Budd, and, for the first time, with Bryan McVae, for NC Congresswoman Virginia Fox.

I’ve decided to devote this post to my fellow advocates.

Most attendees at the recent AKF summit, as is typical, were kidney patients or transplant recipients. Individuals who have had a transplant are often moved by their markedly improved health–something no one takes for granted at these gatherings–to want to pay it forward to others in the kidney community. Their personal stories and their perseverance are always inspiring.

And then there are the dedicated family members of transplant recipients. My North Carolina teammate, for example, Madelynn Karathanas, has been advocating for several years (first from California, then North Carolina) on behalf of her adolescent daughter who first became ill at the age of three. Alyssa fortunately received a life-changing transplant 3 years ago.

The living donors (like me) always happily find one another at such events. It may sound hokey, but living donors tend to feel an instant bond when we meet. At the AKF summit, there were just 6 of us out of 27, a fairly typical ratio. I particularly remember a few of them for having a special impact: Brian Martindale (on my left in group pic), founded a unique organization called Kidneys for Kids; Elizabeth Kay, a Milwaukee radio host, has shared her own story on the air but also featured other inspiring stories of donation/transplant, in an ongoing effort to educate her listeners about kidney donation; and Beth Burbridge (second from left in group pic) has been very active in spreading awareness in Kentucky and was instrumental in efforts to pass the state’s Living Donor Protection Act.

I was happy to meet advocates who don’t have any personal connection to kidney disease but recognize the tremendous need and choose to join the effort. Candace Turner, for example, is a clinical research diversity coordinator at NOWINCLUDED, an agency working to overcome racial disparities in patient care. She’s also an AKF kidney health coach. We surely need more people like Candace to get involved.

I always leave these gatherings inspired by all the committed advocates and especially admire transplant recipients like Jim Myers, who has overcome so much and even at low points still manages to generate the energy to interview advocates, lobby members of Congress, and advocate through social media. Incidentally, Jim also hosts the Kidney Stories 2 video broadcast, which was the first to interview my co-author and me when our book came out.

Last but not least I want to give a shout-out to the dedicated professionals at AKF who warmly hosted us advocates at the summit. After many zooms and phone calls, it was great to finally meet Ben Shlesinger, AKF’s enthusiastic director of government relations, and associate government relations director Katy Gross, who has been so helpful in answering my many emails. And I was glad I was able to meet and chat with Holly Bode, vice president of government affairs.

By the way, besides the government affairs staff, the summit included numerous staff from across AKF. Madelynn and I were delighted to be teamed with Ama Sakyi, who works in patient education; this was her first summit. We enjoyed getting to know one another during a long break between meetings. What a terrific idea: introducing everyone to the myriad avenues available to support the kidney community (fyi, donating a kidney is just one of them).

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.