What began as preparation for a simple surgery set off a chain of events in Janet Tennyson’s life that culminated in a kidney disease diagnosis. This journey would s...
It's time to celebrate all the achievements Voices for Kidney Health advocates drove forward this past year. We passed the U.S. Organ Procurement and Transplantation Network Act. We launched KIDNEY EQUITY FOR ALL™. Four states passed The Living Kidney Donation Act, protecting more living kidney donors than ever.
None of this would have been possible without every dedicated Voices for Kidney Health advocates. Their efforts deserve to be spotlighted! Read on for the stories of five advocates who use their voices and share their stories to inspire change.
1. Daronta Briggs
After four difficult years on dialysis, Daronta received the gift of life from an unknown donor. He gives that gift back by advocating for all people with kidney disease.
"My transplant surgeon gave me a word of wisdom. He said, 'Mr. Briggs, we did not give you a kidney to sit in a rocking chair. We want you out in the community advocating.' I took it to heart and became an advocate," said Daronta. "I got a second chance and I'm using it by sharing my story with congressional members. It makes a mark–it helps get bills passed that support people with kidney disease."
From ensuring kidney disease research funding to expanding home dialysis access, see how you can take action today.
2. Aaron Battle
Aaron learned his kidneys were failing during a routine health check-up. It was a shock since he regularly visited the doctor to track his high blood pressure. Despite this, they had missed signs of declining kidney function.
"I didn't have any symptoms but we know most patients don't have them until later stages. I went to a nephrologist who confirmed my diagnosis," said Aaron. "They predicted I'd need dialysis within a year."
Aaron went home without the education he needed to maintain his kidney function. As a result, his kidney function plummeted. It wasn't until Aaron's first trip to a dialysis unit that he realized the severity of his situation.
"My first visit to a dialysis center was an 'Oh god moment.' I didn't think I could do it. The amount of chairs overwhelmed me. I was lucky enough to move to a smaller dialysis facility. They were the ones who educated me and put me on track to become an advocate," said Aaron. "They signed me up for a conference. I presented my story to patients and healthcare providers who really listened. That experience helped me understand that people wanted to help me. I got my transplant soon after. It's been fifteen years and I'll never stop helping other patients."
Ready to use your voice to make a difference like Aaron? Become a Voices for Kidney Health advocate today.
3. Melissa Tolzien
Melissa Tolzien became an advocate to honor her grandfather, Linus Titus Sanchez. He lived with kidney disease for more than 40 years before passing away on dialysis. She aims to share stories of the man who helped shape her life. By doing so, Melissa hopes to put a face to kidney disease. She did just that during the 2023 Kidney Patient Summit.
"I began advocating because I want to end kidney disease. I felt confident going into the Summit. I already had relationships with government members from Zoom meetings." Melissa said, "Following all my meetings, I sent a thank you email and a personal card. I include images of my grandfather to remind legislators what is at stake. I'm putting a face to kidney disease and thanking them for listening to what we've gone through. This is the key to getting Congress members to pass kidney bills."
Wondering how Melissa is so confident advocating? Voices for Kidney Health doesn't send advocates in without training. We equip you with the skills to schedule and conduct effective meetings. We teach you how to build relationships with lawmakers and provide all the information you need to make a compelling argument. All we're missing is your story.
4. Michael Lollo
Michael Lollo first tried to donate his kidney while serving as a detective with the NYPD. A fellow officer was in need, and Michael wanted to help. While he wasn't a match, that didn't dim his enthusiasm for the idea. A few months later, he saw a billboard in Times Square. Another person needed a kidney. Again, Michael wasn't a match, but he was determined to find a way to become a living kidney donor.
"I researched and learned you can give a kidney without knowing your recipient. I became an altruistic donor or a non-directed donor for the chance to change someone’s life," said Michael. "Someone asked why I didn’t save my kidney in case my kids ever needed one. I hadn't thought about it at the time so I went home and brought it up to my wife. She said, 'God forbid that happened, someone would do for us what you're doing for this person.' I don't regret my choice. I advocate because living organ donation is the key to dropping the waitlist."
Donating a kidney can be expensive between travel, caregiving, and loss of wages from time off work. The Honor Our Living Donors (HOLD) Act wants to change that. Sign today to help more donors qualify for reimbursement for costs related to their donations.
5. Cynthia Infanté
Cynthia Infanté was first diagnosed with kidney disease at fifteen. By nineteen, she was on hemodialysis, where she stayed for four years. Then, she received a kidney from a non-living donor. This kidney gave Cynthia twenty years of a life free from dialysis before failing. That same year, her cousin offered to donate, saving her from dialysis once more. Cynthia is doing everything she can to protect all living kidney donors.
"I have a big connection to the National Kidney Foundation because my cousin is my living donor. I want to make sure he's protected and NKF is fighting for that. He and his family deserve medical leave and life insurance after this selfless act. We're working to get the Living Donor Protection Act passed in Arizona. It would make Arizona a better place for kidney donors and their recipients." Cynthia Infanté said, "I'm also an NKF Peer mentor. I want to help other kidney patients get a transplant or live the best life they can. It's amazing because I feel like I'm learning from them as much as they're learning from me."
Isha Triguero was an active sixteen-year-old who loved playing for her high school track team when, all of a sudden, she began suffering from extreme exhaustion. She c...