The walls of Edward’s home office have not an inch of free space. From floor to ceiling the room is covered in photographs, letters, awards, plaques, drawings, and other memorabilia—constant reminders of the sheer number of lives he has touched. As Founder and CEO of the YNOTT? Foundation, Edward has met and helped countless youth and families who find themselves in unlikely and difficult circumstances needing a transplant. The YNOTT? (Youth Needing Organ and Tissue Transplants) Foundation has positively affected thousands of lives through it’s patient support programs, raised awareness around the need for organ donations, and educated about kidney disease prevention, all on a national scale.
But Edward will be the first to tell you that he is no godsend or genius. “I was just a kid with a vision,” he says. He views YNOTT? with a similar sense of humility. “We are a group of ordinary people trying to do extraordinary things.” He had never planned on starting a patient foundation, on linking up with numerous stakeholders in the transplant sphere, on speaking at National Kidney Foundation’s events, or educating youth in their own neighborhoods about disease prevention and the importance of becoming organ donors. YNOTT? was Edward’s response to the failure of his own kidneys and the realization that many people faced far worse situations. Over the years, his journey became inseparable from the foundation’s and has helped guide its mission. His story is yet another tile on a broad tapestry of kidney transplantation, much like his office walls—one among many.
Although he now resides in Atlanta, Edward’s heart is never far from Ohio. He grew up in Toledo, the oldest son to a single mother with a younger sister and brother. His mother worked full-time, and so Edward was often tasked with taking care of his siblings and keeping house. “I had a lot of responsibility,” he reflects. “It made me grow up fast. I had to be something.” He developed aspirations early on. “I was always passionate about business.” From shoveling snow to selling calendars, he developed entrepreneurial prowess as both a survival tool and way to help those around him. “My only goal was to retire my mom and make her happy,” he adds.
Edward worked hard in school and got involved with athletics, training to maintain a spot on his high school football team. Through sports he saw another opportunity to uplift and surround himself with positivity. “Although I grew up in a single-parent household, I had a lot of amazing people in my life,” he remembers. “A lot of mentors, coaches, and teammates who stepped up and helped fill in that void.” His hard work paid off and he got into Northwood University, majoring in business and getting a chance to play football at the collegiate level.
A year later he transferred to Eastern Michigan University, closer to home, and continued his pursuit of playing football, but something was different. “I was itchy for six months,” he recalls. He was putting on weight quickly too, something he attributed to the intense training he was undertaking. He took a break from training that summer and came home for a routine doctor’s appointment. He never suspected what would be uncovered. “I thank the man above that I went to see that doctor when I did. My blood pressure spiked. It was 248/116.” Doctors treated the situation urgently, packing Edward into the ambulance to go to St. Vincent’s Hospital in Toledo.
Edward’s kidneys had failed and nobody knew why. The only thing that was certain was he needed to be put on dialysis immediately. This had broad implications. “It really hit me when they said, ‘You won’t be able to play football; you won’t be going to school; you’ll be going on dialysis…’ I was crushed.” But he had little choice. He started dialysis, twice a week, and was eventually diagnosed with glomerulonephritis, a form of end-stage renal disease where the kidneys can no longer process toxins from the blood. Finding a transplant match was the only long-term solution for Edward’s situation.
“I went from being an innocent 20-year-old kid, striving to make something of myself, to being stuck in a dialysis center.” Edward learned the routine of the clinic—hours spent in a room full of others suffering from kidney disease, some who would pass away in between sessions. Furthermore, Edward had worked hard to escape the streets of Toledo. “Where I grew up, people called it ‘the mud,’” he says, “because people got stuck there.” It could also be violent. One night, Edward found himself at the wrong place at the wrong time, and was jumped during a random brawl—something he had nothing to do with.“All I could say was ‘why me?’” Feeling down and out, Edward knew he would need to make a change. “I told my mom, I’m leaving Toledo.” He had a friend who graciously offered a spot in his college dorm room at Ohio State University in Columbus. Six months after nearly dying from renal failure, Edward transferred his dialysis care, packed his bags, and moved to Columbus.
“It changed my life,” he reflects. “That’s where my journey with the organization started and so many other opportunities.” Inspired by the fresh milieu of Columbus, Edward began to see his situation in a different light. “That ‘why me’ in Toledo became a ‘why not me’ in Columbus,” he says. “That’s when I realized what I had planned for my life—to do all these great things in school and sports—was not what the man above had planned for me.”
Edward started visiting Nationwide Children’s Hospital in Columbus and met dozens of kids, much younger than him hoping for transplants, sitting on years-long waitlists due to the national shortage of organs. Many of them were missing out on things that he had gotten to enjoy: the school, sports, social events, the influential mentors and community members, even their much loved toys and belongings. “It was then I knew that could’ve been me,” he states. A wave of gratitude filled his heart and swept him to a higher plane. “I realized if I changed my attitude, I could change my altitude.”
Edward started getting ideas. He saw the need: for donated organs, for better access to care, for better foods, for toys and games, and fun hospital visits. He set up a poster-board in his friend’s dorm room and began mapping it out. His thoughts gelled. Others listened and offered support, volunteering their time and input. They threw fundraisers—“Why not party for a cause?”—and signed up new donors. All the while Edward was gleaning wisdom from the business world and began studying toward a certification in Nonprofit Management. The pieces were slowly falling into place. A friend knew a lawyer who could help them file, and in September 2007, YNOTT? was officially born.
As modestly as Edward speaks of his experience, it’s hard to imagine the gumption that it took to pull it all off. He was living on a strict renal diet, continuing dialysis, waiting for a donor, and taking courses all while launching the foundation. However, his load was about to get a bit lighter and his drive a little stronger. In October 2008, after three years on the waitlist, Edward finally got the call—he had a match from a deceased donor.
“I almost jumped off the balcony,” he recalls. “My new life had begun.” The next day he arrived at the Ohio State Medical Center to receive the most valuable gift of his life. Even with his happiness that day, he regarded his donor’s decision as one of the most moving and selfless acts imaginable and it catapulted his desire to remain involved in the transplant world. He reached out to the donor’s family. “I wrote them a letter,” he says. “In it, I said, ‘Words are meaningful, but actions are powerful.’” He felt grateful and eternally indebted. “The best way I can let them know how appreciative I am of their daughter’s life, is to continue to spread the word and try to help people.”
Over the past 14 years, the YNOTT? Foundation has grown as Edward brought in passionate people to address the needs of pediatric transplant patients and their families, especially from underserved and minority communities. Crucial to this support is providing education and a sense of empowerment. “We educate them about what’s going on,” says Edward, “but we also help them as equals. I’ve been where they are.” Paramount to preventing kidney disease is educating youth about healthy lifestyle choices and improving access to early testing—both a fraction of the cost of later medical interventions. He also works to dispel myths about organ donation and to sign up new donors, knowing the extent of the organ supply shortage. Edward remains open to innovations in the field, if they are safe. “If we can come up with proven technology that helps decrease the shortage of organs, why not?” he says. “New technologies are an important part of the future.”
As YNOTT? works on the grassroots level to improve outcomes, Edward has taken his message to Capitol Hill, supporting measures to do the same. This year he worked to influence the US Centers for Medicare and Medicaid Services (CMS) to increase access for kidney transplants alongside new payment structures for patients with kidney disease. Edward lost coverage himself after the three-year window for Medicare’s coverage of his anti-rejection medication expired, forcing him to cover the cost of medication. Based on that experience, he supports the passage of the Immuno Bill (H.R. 5534), which is aimed at extending coverage for immunosuppressive therapy for kidney transplant patients.
All this advocacy work comes naturally to Edward, but at the end of each day he does finally have to focus more on himself, and his own health. “I take 20 medications a day right now,” he says, reflecting on the sometimes tenuous reality he still exists within. Even post-transplant, Edward practices much of what he preaches as prevention—eating right and getting frequent exercise. “I’m trying to get my athletic body back,” he quips, recognizing the toll that his journey has wrought on his physical health thus far.
On a hot, sunny day outside of Atlanta, Edward takes to the golf course, standing over the ball with a driver in his hands. The sport has followed Edward through his adulthood, offering a low-impact way to stay active and healthy so that he can continue to spread his message further. “I want to continue impacting lives. I want to continue to achieve my goals—to build something that outlives me.” With a stern focus he lines his feet up alongside and takes a strong swing of his club sending the ball flying. Edward smiles with satisfaction as the ball bounces hundreds of yards ahead on the fairway. The distance he has traversed in his life has certainly been no putt from the green, but the difficult journey has yielded a powerful advocate. “I wouldn’t trade nothing, no money or anything, for the experiences, strength, and humility that made me who I am.”