Teen with AAV among nominees for NKF’s Kidney Hero of the Year
Fundraising campaign celebrating advocates concludes tomorrow
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A teenage girl who underwent a kidney transplant after experiencing kidney failure associated with ANCA-associated vasculitis (AAV) is among the advocates nominated by the National Kidney Foundation (NKF) for Kidney Hero of the Year. The nominees include individuals, pairs, and families.
The new fundraising campaign celebrates advocates who have made a lasting impact on the kidney disease community. Each nominee has a separate donations page, and the nominee whose page raises the most funds by tomorrow, Aug. 18, will be declared the 2026 Kidney Hero of the Year. The winner will be announced Aug. 19, and the NKF will be celebrating them across its national communication channels.
“This year’s nominees have turned personal challenges into powerful acts of leadership, compassion, and advocacy,” Marc Hurlbert, CEO of the NKF, said in a foundation press release announcing the campaign. “They remind us that heroes aren’t defined by extraordinary circumstances alone, they’re defined by the way they lift others up. We are proud to recognize these remarkable individuals and invite the public to join us in celebrating their impact.”
Routine checkup yields unexpected diagnosis
Among the nominees is the mother-daughter pair of Leah and Reggie, a teenager girl with AAV, a rare autoimmune disease that damages small blood vessels, most commonly those in the lungs and kidneys.
“Being a Kidney Hero of the Year nominee is such an honor,” Leah said. “If sharing our story can bring a little hope, raise awareness, or help someone feel less alone, then that’s what matters most to us.”
Their journey began after a routine checkup when lab tests revealed that Reggie’s kidneys were stressed. Further testing soon showed that Reggie had AAV, which had also affected her lungs.
2024 was going to be my year, but nothing happened the way it was supposed to. … My friends and I were excited to start junior high together, but I couldn’t go on the first day. I missed out on a lot.
She quickly progressed to kidney failure, necessitating home-based dialysis, in which a machine clears waste and harmful molecules from the blood when the kidneys can no longer do so.
“2024 was going to be my year, but nothing happened the way it was supposed to,” Reggie said. “I wanted to improve in competitive dancing. I could dance on dialysis, but not as much. My friends and I were excited to start junior high together, but I couldn’t go on the first day. I missed out on a lot.”
Despite the challenges, Reggie was able to lean on her friends and family to help her get through.
“I was very open with my friends about what I was going through. I know some people hide it, but it’s easier when they know,” Reggie said. “If I couldn’t eat something or had to sit out because I didn’t feel good, they knew why.”
‘Stay positive’
Reggie needed a kidney transplant, but neither of her parents were eligible to donate for health reasons. So the family took to social media, with the account @resilient.reggie, to seek out a donor.
The journey wasn’t straightforward — at one point, a donor had been found, but then they died unexpectedly and their organ ended up going to someone else. But eventually, the advocacy campaign paid off and Reggie was able to find a donor and get a transplant.
“I was so scared going into surgery, but it was actually really easy compared to everything else,” Reggie said. “The anti-rejection medications are hard, and I’m nervous about rejection, but I feel better and have so much more energy.”
Reggie has since been doing well. To people currently dealing with kidney disease, she says: “Stay positive. I know that it is really hard sometimes. I know dialysis is challenging, but the machine kept me alive until I could get a transplant. Try to remember you’re loved. You’re awesome. And you’re going to make it.”
Reggie and her mom were selected as nominees for the Kidney Hero of the Year to celebrate their advocacy for childhood kidney disease and kidney transplant recipients.
“There are so many amazing kidney warriors, donors, recipients, caregivers, and advocates who deserve this too,” Leah said. We’re so thankful to be part of such an amazing community, and especially thankful for her donor, who will always be such a huge part of her story.”
As of this writing, Reggie and Leah are in third place with $220 raised. First place currently belongs to Bernie and Hope, a kidney transplant recipient-donor pair whose page has raised $2,849. In Bernie’s case, kidney damage was due to IgG4-related disease.
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