Profiles
Read the inspiring stories of patient advocates, those at risk, people with chronic kidney disease, dialysis patients, kidney care professionals, living organ donors, researchers and supporters.
Advocate Profiles
Carolyn Price
The word “advocate” is far too passive a word for Carolyn Price. The Jackson, Mississippi native is a force of nature, who stormed (politely, of course!) Capitol Hill in April 2006 along with other “People Like Us” patient advocates. Their mission was to educate lawmakers about the crucial need to allocate money for all aspects of organ donation, from research to financial reimbursement for living donors. Price, however, didn’t stop after successfully enlisting her Congressman, Representative Bennie Thompson, to join the Congressional Kidney Caucus. She cornered a congressman from Louisiana to request funding for the Organ Donation and Recovery Act. “And I can’t even vote for him -- and he knew it!” reports Price, 55.
When she was just 23, Price’s kidneys began to fail. “To this day, no one knows why,” she says.
Though stunned, Price paid close attention to her doctor’s orders, exercised and ate properly, managing to forestall dialysis until she was 46. Three years later, in 1999, she received a transplant at the University of Mississippi Medical Center. Since then, there isn’t much Price, a mother, grandmother and regional manager for BellSouth, won’t do on behalf of the National Kidney Foundation. As an African-American -- a population disproportionately affected by kidney disease -- Price does extensive outreach work, speaking at community meetings and health fairs, as well as from church pulpits. She also visits dialysis centers to encourage those who need, but may fear transplants, to move forward.
“They see how good I look, how healthy I am, that’s so important to see a living, breathing example of a transplant recipient, particularly an African-American, like them,” she says.
What’s more, the woman who prefers marathon shoe shopping to sports, has even competed in the Transplant Games. “I bowl,” she says, laughing, “and, I’m really lousy at it.”
What Price excels at is feeling gratitude for being alive. “In the deepest moment of despair a family who lost their 13-year-old son, donated his organs and gave me and others a chance at a normal life,” she says. “How could I not give back?”
Celeste Lee
Celeste Lee became a philanthropist and health care advocate at the ripe old age of eight. She was watching Saturday morning cartoons when an ad came on about hosting a community carnival for the Muscular Dystrophy Association (MDA). “I grabbed my crayon and wrote the phone number on a box of cereal. Actually, right on Cap ‘n’ Crunch’s head!” She proudly raised $600 for the MDA.
Years later Lee no longer writes in crayon, but her enthusiasm and effectiveness haven't diminished. Despite a demanding career as Chief of Staff for the President and CEO of Duke University Health System and Chancellor for Health Affairs, as well as thrice-weekly dialysis treatments, Lee is a tireless powerhouse for the NKF. As an editorial board member of Hope Street, an animated novella featuring characters dealing with the many ups and downs in kidney dialysis patients’ lives, Lee reached back into her childhood to help flesh out their issues. Her experience is firsthand, as Lee was just 17 when an autoimmune disease destroyed her kidneys. She was on dialysis for three years before receiving a transplant. A decade later, the organ failed and she returned to dialysis.
Lee was one of the original 100 patient advocates chosen to participate in the launch of NKF’s “People Like Us” patient empowerment initiative on Capitol Hill. Since then, she has gone to Washington, D.C. several times, seeking support for kidney-related legislation and encouraging policymakers to join the Congressional Kidney Caucus. “I’m in a really good position to communicate with all kinds of folks, from doctors and health care policy heads to aides on Capitol Hill,” says Lee. “I feel passionate and obligated to be a voice of kidney patients who otherwise might not be heard.”
She is also an ardent believer that dialysis patients deserve consistent and quality care, and has fought for systematic training and standardized licensing of employees in such facilities. “Dialysis is lifesaving, but it’s also time consuming and tough on patients. I want every kidney patient to have the care they deserve,” says Lee, who advocated for the passage of the 2007 Kidney Care Quality and Education Act. "I love life," shares Lee, who whips around town in a convertible, "and what makes me feel great is helping other kidney patients. Call it a virtual hug. May sound corny, but it's true."
Rose D'Acquisto
Rose D’Acquisto suffered a loss so sudden, so painful and so permanent that she believed she could not bear it. A writer, Rose was 34 and wildly in love with Tony, her artist husband, when on Sept. 23, 1996, an undiagnosed brain tumor hemorrhaged and plunged him into an irreversible coma. He was just 35. “Then, I met an angel in the form of Tony’s intensive care nurse," Rose says. "She asked if he was an organ donor.” From the depths of her grief, Rose knew immediately what her gentle husband would have wanted.
“I’m not going to pretend it wasn’t an excruciatingly painful decision,” recalls Rose. “We were Romeo and Juliet—if Tony died, I was supposed to have died too. The donation allowed me to walk out of that hospital holding onto a little piece of something that in time opened up and has became more than I ever could have imagined!” That something was hope, which Rose has been passing on to others in a myriad of ways ever since. Among her volunteer efforts, Rose is on the board of NKF's National Donor Family Council Executive Committee, raising awareness and helping to shape public policy on behalf of donor families. And despite working full time, Rose edits a quarterly newsletter of profiles, poems and other writings that help inform and connect organ donors and recipients. She also shares her own story, promoting organ donation as the greatest gift of love.
“There’s nothing I wouldn’t do for the NKF,” she says. “They understand that the stories of kidney patients, transplant recipients and donor families are all linked together.” Rose has managed to go on, marrying a fellow writer. “When Tony died, my heart died with him,” she says matter-of-factly. “But when I met my husband Paul, I grew a second heart.” Sometimes Paul worries that her involvement with the NKF forces her to relive the trauma of Tony’s death, but she says it’s exactly the opposite. “When I hear
someone else’s story, I’m amazed at their strength and resilience. Beyond that, donor families are the kind of people you can only hope to know because they’re so
magnanimously generous.”
CKD Profiles
Duane Sunwold
Everyone with chronic kidney disease should be so lucky as to be on a “Duane-friendly diet.” No, it’s not the latest diet, like Atkins or the Zone. The Duane-friendly diet is what Duane Sunwold’s students at Spokane Community College’s Inland Northwest Culinary Academy call the healthy food the chair of their department has eaten since he was diagnosed with nephritic syndrome five years ago. His nephrologist suggested that Sunwold, 51, jettison “the typical American diet, heavy on meat that I was eating,” and his dietitan agreed that he should give it a try. In two weeks, Sunwold felt remarkably better, and the best part is that he has been able to control his disease with medication, rather than dialysis.
“Fate put me here for a reason,” says Sunwold, who is an active participant in NKF’s People Like Us Patient Advocacy group. “Now it’s my turn to use my experience to educate and help others.” His first public meal plan was a smash: for a recent NKF meeting of health care professionals last March, Sunwold created a menu for those doctors, dietitians and other attendees (prepared by the hotel’s executive chef) of kidney-friendly recipes – sweet potato black bean burrito, a stuffed manicotti with tofu, couscous and pine nut baked casserole, and last but not least, strawberries with fresh tofu for dessert. “There was the regular buffet lunch, which I was told would be the main food, and my food would be used for tasting,” he says, chuckling at the memory. “Let’s just say people were licking their plates clean of the kidney-friendly offerings. I’m certainly learning the power of great tasting Duane-friendly food!”
Sunwold is creating a cookbook for chronic kidney disease patients and some of those recipes have already made their way into NKF’s Kidney Care newsletter. Whether with his future line cooks and chefs, or at home, with his nurse wife and two kids, Sunwold practices what he preaches.”I have to be an example,” he says, simply. “And I didn’t even used to like tofu!”
Dialysis Profiles
Dave Jones
Dave Jones is a control freak, who since 1982 has made it his mission to help other people with chronic kidney disease get in touch with their inner-control freaks.
Through countless volunteer positions, including serving on the Executive Committee of the National Kidney Foundation’s Patient and Family Council, Jones has urged others to take control of their disease and its treatment. “Works for me,” he says. “Being a control freak is what has kept me alive since my internist told me I had better get my personal effects in order because I was going to die.”
That was in 1972, when Jones was just 32, and suffering from kidney failure. Now 68, the former vice-president of sales and marketing for a chemical company, father
of two sons and grandfather of two girls, has not only survived but thrived.
Not that it has been easy: Jones, a chemist, was on dialysis for 22 years before undergoing a kidney transplant in 1994. It failed after 6 1/2 years, and Jones resumed dialysis, which he remains on today.
Like many people with chronic kidney disease, he has known feelings of frustration and hopelessness that can plague the longterm ill. But he has trumped those fears by educating himself about his disease, symptoms and treatments and by becoming an advocate for his own health care which is exactly what the NKF’s Patient Family Council empowers members to do. Jones exudes a zest for life that is contagious.
“I’ve run into people with chronic kidney disease years after I’ve spoken to them and they’ve told me they are doing well and that I was their role model,” he says proudly. “There’s nothing more rewarding.”
Rosa McJunkin
Rosa McJunkin knows just how hopeless one can feel as a mother when her child is facing a disease that causes one symptom after another without an explanation. Rosa’s daughter, Iyanna, has been fighting kidney disease since she was 11 years old. At 13, Iyanna’s vision was affected and her doctors couldn’t stabilize her hypertension. In addition, she started to develop arthritis, back pains and migraines and her mother felt helpless and hopeless.
But Iyanna, now 23, turned out to be more resilient than Rosa ever dreamed. She’s meeting the challenge of kidney failure head on and became a mother herself, against all odds.
“All I wanted was for my teenager to have a great childhood, to go to dances, join a sports team or even just enjoy being with her family,” Rosa said. “But it was one doctor’s visit after another.”
Iyanna eventually went into kidney failure, and at age 23, she had to begin dialysis, but not before she made a life-changing decision – to become a mother herself.
“The doctors had told us early on that Iyanna couldn’t have any children,” Rosa said. “But she decided she wanted to be a mom… how could we say no?”
Despite numerous surgeries, dialysis treatments three times a week and other health complications, Iyanna gave birth to a healthy baby girl, making Rosa a glowing grandmother.
“My joy is being able to hold the baby… I make sure every day that her mother is healthy, and the whole family pitches in to help,” Rosa said. “My day’s schedule is determined by how my daughter’s days begin, but that’s what a mother is for – to help and to comfort when a child is in need.”
“It’s hard to watch my daughter not being able to do simple things after dialysis, but Iyanna is determined to live life for her daughter and continue her treatments at
the dialysis center,” Rosa said.
KEEP Profiles
Alma McBride
In 1961, Joyce and Jacob Dixon's five-year-old daughter died of kidney failure. "It was before dialysis and transplants--when kidney disease was incurable," recalls Joyce. The doctor asked the Dixons to donate their child's kidney for research and they generously agreed. "We became donors before we knew what donors were," says Joyce, now 74.
The couple's commitment to the National Kidney Foundation began then and hasn't wavered since. Both privately and through their company, Creative Management Technology, Inc., a government contracting firm, they have given money, time, and sponsored an annual fundraising golf tournament for the foundation. In 2003, they took their commitment one step further by sponsoring a NKF Kidney Early Evaluation Program (KEEP) for their employees. Every one of their 375 local employees was invited to be fully screened for kidney disease--free of charge. Of the 182 employees who underwent the screening, an astonishing 70% were deemed at risk for the disease. Among them was Alma McBride, the company's financial analyst, who is a diabetic.
Says Alma, "This test brings home the false sense of security so many have. Most doctors do not routinely screen for kidney function. People in the company still say, 'I didn't want to go to that screening, but if I hadn't gone, I would have been much sicker before finding out there was something wrong with my kidneys.' It's an awesome program."
Sadly, Jacob Dixon died in 2003 of kidney disease, after having spent three months on dialysis. Says Joyce, "I firmly believe my husband would be alive today if KEEP had been available to him a few years ago. After losing my spouse and a child to this dreaded disease, my current goals are to create opportunities to promote this early detection program and encouraging health care providers to add the kidney function test to patients' annual physical examinations."
Aura Lemus
Aura Lemus made history in 2007 by becoming the 100,000th participant to be screened in the National Kidney Foundation’s Kidney Early Evaluation Program (KEEP) and by doing something that she is remarkably good at -- taking care of others.
This twenty-eight-year old Inglewood resident works 60 hours a week at Costco, cares for her brother who has multiple sclerosis, helps pay the bills at home and lends a hand with chores around the house, running errands and picking up groceries for her mother. Aura even finds time for some fun, rooting on her beloved Dodgers and dancing away on Saturday nights with her friends.
The KEEP program is a free health screening for people at risk for kidney disease. The program has been presented by the National Kidney Foundation for the last 10 years in cities around the country. KEEP offers a comprehensive screening including anyone with diabetes, high blood pressure or a family history of kidney disease went through a health risk appraisal, blood pressure measurement, blood and urine tests and had the opportunity to speak to a kidney specialist on site.
Aura was a perfect match for KEEP, because the program highlights the three main risk factors – diabetes, high blood pressure and a history of family kidney disease – two of which drove her to sign her mother up for the screening.
“My mother has high blood pressure and diabetes,” Aura said. “So when I saw the KEEP announcement, I thought I would make an appointment for both of us – better safe than sorry. The National Kidney Foundation staff let me know that a family history of diabetes and high blood pressure puts me at risk as well.”
People who belong to certain minority groups, such as African-Americans, Hispanics, Asians or Pacific Islanders, are at increased risk for Chronic Kidney Disease – another reason Aura went to the screening. “Being a Latina means I am part of that high risk group and I just wanted to take some precautions. It is always better to be educated about potential risks than be surprised later on,” Aura said. “This screening was so important not only for my family, but for the many people who are at risk and don’t even know it.”
Aura felt honored to be the 100,000th participant at the screening. She wants to make sure the message of early detection and prevention reaches as many people as possible.
“I need to stay healthy for my family, especially for my mother and younger brother,” Aura said. “Besides, who else is going to cheer on the Dodgers when they make it to the World Series next year?”
Delia Jervier
A devoted single mother, competitive athlete and all-around dynamo, Delia Jervier has neither the time nor inclination for self-pity. “I don’t like the whole ‘why me?’ mentality - I won’t have it,” says Jervier, 39 who was diagnosed with kidney failure in 2004.
Jervier became a chronic kidney disease patient without any real warning. Seemingly healthy and fit, she had gone to a hospital emergency room after experiencing heavy bleeding. She was admitted for tests and stunned speechless by the diagnosis: kidney failure.
“I thought the doctor was coming in to tell me I could go home,” Jervier says. Instead, he told Jervier she needed to begin dialysis as soon as possible. The irony, says Jervier, is that she had previously volunteered at a National Kidney Foundation KEEP screening. She was “so impressed with the importance of early screening,” that Jervier then coordinated a KEEP screening for the American Diabetes Association where she worked as an event planner. But she was never screened herself and did not get the benefits of early detection that could possibly have prevented further kidney damage. “After my diagnosis it was natural to seek out information for myself and to offer to do whatever I could to raise awareness and educate others,” says Jervier.
Jervier is a huge advocate for KEEP and tells everyone she knows to get screened if they fall into the risk categories. She's also joined NKF's People Like Us patient empowerment movement and say it has given her "the opportunity to talk to people and to listen to others going through the same experiences, as well as to let our lawmakers know what chronic care kidney patients need and deserve.”
Although Jervier sometimes has hard moments, she is proud of her strong faith and wonderful son, Nicholas and is thrilled to be able to work full time and to help others.” A former marathoner, Jervier is determined not to become a couch potato. “I took up cycling,” Jervier says proudly. “I completed 50K.”
Richard Demeola
At 66 years old, Richard Demeola, a retired engineer, enjoys spending time with his wife Sharon, and together they take great care of their pets and their garden. What they weren't always used to taking care of, however, were their kidneys.
Richard and Sharon have always been the type to attend health fairs and any health-related events, so when the National Kidney Foundation scheduled a free kidney screening in their area through the Kidney Early Evaluation Program, they immediately added it to their calendar. With no other reason to attend other than the fact that it was free and local, Richard and Sharon showed up feeling healthy and confident about the test results they would receive. Sharon's test results came back fine, but Richard wasn't so lucky. Shortly after the screening, a letter with some unusual information was delivered to the Demeola's house.
"It [the follow-up letter] advised Richard to go see his doctor, because the tests taken at the screening showed that he had some kidney issues," Sharon recalls. "It was a total surprise; he didn't have any symptoms or history, besides kidney stones a few years ago."
When Richard saw his doctor, his kidney "issue" turned out to be worse than either of them could have imagined-one of his kidneys wasn't functioning at all, and the other had kidney stones in it. Soon after he received this information, he had his nonfunctioning kidney removed, and took care of the stones in the other.
"If it weren't for the screening, we'd have no idea," Sharon says. "He had absolutely no symptoms. I credit that KEEP screening for saving my husband's life."
Today, Richard is healthy and constantly monitoring the health of his only kidney, to make sure he stays healthy and can continue to do the things he enjoys so much, like exercising and spending time with Sharon.
Rosalie Swick
Rosalie Swick thought her heart would break when she had to give up riding her motorcycle after an accident left her with a back injury a few years ago. “I felt such freedom on my motorcycle,” the 66-year-old retiree says wistfully of traveling in and around her hometown hamlet of Findlay, Ohio. “But that was nothing next to what happened to me this year when I was feeling so weak I could barely walk.”
Doctors at the local hospital told Swick there was “absolutely nothing wrong,” despite three EKGs and her reports of frightening fatigue and unusual lower back pain. That’s when a dear friend, who had read in the local newspaper about NKF’s free health screening being done in Columbus through the Kidney Early Evaluation Program (KEEP)™ , took Swick on a 100-mile trip that saved her life. When she saw the line of people waiting for the free examination, Swick wanted to turn around and go home. “I thought it would take forever, but the KEEP people were organized and handled us all,” Swick says. “I’m not easily impressed, but the KEEP people were fantastic, and smart too.”
Swick is also grateful to her physician, Dr. John Biery, who sent her right to a cardiologist when he received the KEEP test results that showed high blood pressure, among other ailments. He told Swick she needed immediate heart surgery or she would die. Equally important, the KEEP screening found that Swick had protein in her urine, an early marker of kidney disease. Unlike so many others who discover that they have the disease only when their kidney function has deteriorated so badly that the only recourse is dialysis, Swick got the information early enough to manage her disease. “Pure and simple, KEEP saved my life, and I tell everybody about it,” says Swick, who underwent a successful triple bypass surgery. She has resumed going to church and doing all the other activities big and small that give her pleasure. “I don’t shuffle anymore," she reports, " I stride!”
Kidney Care Professional Profiles
Dr. Cynda Ann Johnson
Cynda Johnson thinks nephrologists are “a great group of doctors.” Furthermore, Johnson says she is “jazzed” over having been a member of Kidney Disease Outcomes Quality Initiative (KDOQI)® Advisory Board, a committee of nephrologists who defined chronic kidney disease (CKD) and classified its stages.
Her work on that committee is what the 56-year-old primary care doctor calls “a real
lovefest” between her and the National Kidney Foundation. This is a woman who chooses her love interests carefully, as she has many suitors vying for her time. One of the leading family practice physicians in the nation, Johnson is also a top educator, academician and researcher who has just become Founding Dean of the country’s newest medical school, a partnership between the Carillon Clinic and Virginia Tech. Creating a medical school from scratch is a great excuse to keep her off of committees, but she always says yes to the NKF. She is also on the editorial board of NKF’s Chronic Kidney Disease Update online newsletter. “I dropped out of a lot of things, but the real truth is that this group of kidney doctors and the NKFlistened to me and really responded to my opinion,” says Johnson, who is getting settled in Roanoke, Virginia, with her physician husband of 35 years. “And if I didn’t give my opinion, which is rare, they would ask me. Even more, what they did and what they are doing is making such a difference in people’s lives!”
The same can be said for Johnson, who is tireless in her efforts to reach and teach primary care physicians about kidney disease. This means everything from speaking engagements to educational seminars to, yes, committee appointments. “Kidney disease is under diagnosed and under treated,” says Johnson of the complex disease, which often isn’t discovered until the kidneys are failing.
Karen Wiesen
Karen Wiesen would be the perfect poster person for renal dietitians everywhere, though the modest 50-year-old educator and author would never accept such a designation. But let’s listen to Wiesen describe her work and decide for ourselves, shall we?
“Most dietitians either like or dislike working with kidney patients -- there is no in-between -- because it’s so complicated,” says Wiesen, who has spent the past 17 years of a nearly three decade career as a dietitian working with chronic kidney disease patients. “Kidney patients often have five or six different health issues you have to address from medication consequences to hypertension to diabetes. Which is exactly why I love it. It’s never boring. You wear so many hats, including dietitian, teacher, social worker, investigator, cheerleader, even a little bit nurse!”
Wiesen works full time as a renal dietitian for Barnes-Jewish Dialysis Center at Washington University School of Medicine in St. Louis, teaches student interns and has co-edited a textbook, “A Clinical Guide to Nutrition Care in Kidney Diseases,” a joint project of the NKF’s Council on Renal Nutrition (CRN) and the American Dietetic Association. The book was the result of Wiesen’s involvement with the NKF for many years, including as an associate chair of CRN and editor of the NKF’s newsletter for allied health professionals, Renalink. She has just finished writing a chapter for another book, “Nutrition and Kidney Disease,” to be published later this year. Oh yes, and she participates in panels and conferences, where every now and again she is rewarded when a former intern, who reports that training with Wiesen five, 10, even 15 years ago, convinced the then-student to become a renal dietitian. “I actually do have some converts to renal dietetics,” Wiesen says with a smile.
Mary Wendt
Mary Wendt listened as the woman spoke haltingly of her feelings of sadness since Hurricane Katrina had devastated her hometown and upended her life. “I’ve got to stop talking about all this loss or I’ll cry,” the woman said quietly. Wendt, a dialysis social worker in New Orleans, comforted the normally stoic patient, “This is the place to cry! Right here!” Though Wendt is kindly and soft-spoken, she also happens to be a veteran social worker who can cut through the thicket of bureaucracy like a chainsaw if it means securing financial aid and other services for her dialysis patients. But Katrina has left behind the sort of emotional damage that requires extraordinary training and care. That’s why Wendt, former president of the foundation’s local Council of Nephrology Social Workers, has helped organize the National Kidney Foundation’s "People Like Us – Stepping Back into Life” program, created to help those on dialysis cope with lingering post-Katrina trauma. Social workers throughout Louisiana have just received kits that include a two-part audio CD along with a facilitator’s guide they can use in a classroom setting, Additionally, patients undergoing dialysis can listen individually to a CD about how to get through depression, and hear people like themselves tell their personal stories.
“Imagine,” says Wendt, a New Orleans native, “many have lost their homes, family, friends, churches, even transportation to and from the dialysis clinic. And they still have to deal with a chronic illness that requires a healthy diet, medications and dialysis. It’s staggering. Most don’t identify what they’re feeling as depression. They say they’re ‘tired’, or ‘stressed.’ We are so grateful for anything that helps us to help them cope.” Wendt, whose home received only minor damage, says she is profoundly moved by the patients, whose fortitude sets an example to the doctors, social workers and staff. “I am so impressed by my patients,” she says. “They are poor, they’ve been shaken to their core, and with all the stress and the loss of their support systems, they aren’t whiners. I often think they help me cope more than I help them.”
Nelson Kopyt
Nelson Kopyt is a worrier. “My greatest fear,” says the 57-year-old nephrologist, “is that somebody is going to end up with a problem and it’s not going to be addressed quickly enough.”
Luckily for his patients throughout Pennsylvania’s Lehigh Valley, Kopyt doesn’t just fret, he acts:
He has created what he calls “a virtual chronic kidney disease center,” a convenient way for patients to receive comprehensive care and counseling between office visits. As part of this effort, a team of three professionals—a nurse practitioner, a dietitian and a social worker—travels weekly to five different dialysis centers. Patients receive everything from test results and medication, to meal planning and getting help with the emotional impact their disease may be having on them and their families.
His chronic kidney disease clinic is six years old, but his commitment to catching and slowing the progression of kidney disease began soon after Kopyt joined a group practice 20 years ago. Since then, he has taught scores of primary care physicians how to spot, test and treat patients who may be at risk for developing kidney disease due to high blood pressure, diabetes or family history of kidney problems. Now, Kopyt, who serves as associate chief of nephrology at Lehigh Valley Hospital, is extending his reach by working with the National Kidney Foundation and a group of experts to develop a continuing medical education program.
This program will be offered to nephrologists around the country to help them come up with the best approach to treating chronic kidney patients. He also serves on the editorial board of the foundation’s electronic newsletter, “Chronic Kidney Disease Update,” geared for general health care practitioners and the public. But his commitment to his patients comes first, which has its rewards—and its drawbacks: “I can’t tell you the number of cookies and fruit baskets I get from grateful patients,” he says laughing. “But my golf skills are very, very poor. And my wife periodically threatens to divorce me if I don’t slow down. We’ve been happily married for 30 years, so I’m hopeful she’s just kidding.”
Living Donation Profiles
Emily Biondi
“I’m sort of a preacher and poster child for transplantation,” says Emily Biondi, 23. “My doctor calls me when young patients need a transplant and I go and talk to them.” With a light smile and runway beauty, Emily not only speaks and supports, but she also sings for the cause that has saved her life.
Several years ago, kidney disease temporarily derailed her college career when extreme fatigue sent her home to her parents’ care. Eventually, doctors discovered kidney failure. Emily underwent a blood transfusion and began dialysis. At 19, she needed a kidney transplant. Her father came to the rescue, with “Lefty,” Emily’s pet name for his donated kidney. Lefty has not only saved Emily’s life, but transformed it. Since the transplant, she has been a large supporter of the National Kidney Foundation, helping researchers to develop ways to improve the treatment centers for kidney dialysis patients, talking to kids who are about to undergo transplant surgery and speaking on behalf of organ donation.
In addition, Emily has racked up medals at the National Kidney Foundation's Olympic-style U.S. Transplant Games while her father Norman watched with pride and bemusement. “This was a girl who refused to go out for high school sports because of that sweating thing,” he reports wryly.
George Blank
In 2004, George Blank, 55, watched a television news story about a son who gave a kidney to his father and thought, “I can do that.” His kids were grown and settled, he had a good job, and he was healthy. “I figured, I had two kidneys and just needed one, so why not?” He contacted the local organ procurement organization and told them of his plan. After undergoing preliminary tests that cleared him as a donor, the procurement agency identified a recipient and plans were made for the surgery.
“My two daughters were a bit apprehensive, but my son said ‘Go for it,’” George recalls. Before the surgery, George wondered about the recipient, thinking about how his kidney would suddenly be helping someone he knew nothing about.
Following the surgery, his questions were answered when he met his recipient, a young woman whose kidneys had failed when she was young and who had undergone transplant surgery once already. Recently, her donor kidney had stopped functioning and she had been on dialysis for several years, hoping another organ would become available. Since that initial meeting, the two have stayed in touch.
“When people ask me why I decided to donate, I tell them that the look of joy and appreciation on my recipient’s face has made it all worth it.”
Rooney & Dudley
Most people develop close friendships at school, the office or around the neighborhood. Not Eileen Rooney and Jennifer Dudley. Their friendship began when Eileen gave a piece of herself away to a total stranger. When Eileen finally met Jennifer, the woman who had received her anonymous donation of a kidney, the two laughed, cried and discovered they had more than a kidney in common.
Their meeting and ensuing friendship was a happy conclusion to a story that began when the two participated in one of only 84 kidney transplants performed in 2004 that involved living donors and recipients who were absolute strangers.
In 2003, while Eileen, 44, was working as the manager of a Ronald McDonald House, in Burlington, Vermont, she witnessed the distress a family was undergoing as their child, who was suffering from kidney failure, waited for a new organ. Eileen began exploring whether she could offer one of her kidneys to the young boy but, he died before anything could be done. Nonetheless, she decided to pursue donating a kidney anonymously to honor the boy's memory.
Eileen's Fortunate Recipient
As a toddler, Jennifer Dudley underwent surgery to remove a 10-pound tumor, the result of kidney cancer. Cobalt radiation treatments followed. As a young woman she met and married a U.S. Air Force fighter pilot stationed in England. After the couple settled in Vermont, Jennifer’s kidney problems returned and her name was put on the transplant waiting list.
Soon thereafter, Jennifer learned that there was a donor kidney available. The two surgeries took place successfully in adjoining operating rooms. Since the donation was anonymous, the transplant coordinator was careful to keep the patients and their families from bumping into each other in the hospital hallways.
With a new kidney, Jennifer recovered quickly. “I didn't know how bad I felt before,” she said. “Now I feel really, really good.” The recovery for donor Eileen was swift too. Eight days following the surgery, despite frowns from her transplant coordinator and reluctance from her surgeon to condone the plan, Eileen went kayaking. “I was just so thankful that I was healthy and wanted my transplant coordinator to relay to my recipient that I was feeling really okay,” recalls Eileen.
After their first meeting, a close friendship developed that “goes beyond the transplant” as Eileen would say. They speak or see each other every week, share tidbits about their lives and work and go to concerts, shop for clothes, try new restaurants and attend baseball games. The two also team up to advance the cause of organ donation. Recently, Eileen convinced her company to provide paid leave for organ and blood donation. In addition, she and Jennifer spoke to the company employees about the importance of organ donation.
Just like most friendships, their partners have gotten to know each other, too, as have their families. Jennifer, whose own mother is in England and whose father is deceased, has “adopted” Eileen’s parents, sending them cards on Mother’s and Father’s Day. Every year on the anniversary of the transplant, Jennifer and Eileen plan a special day to celebrate their lives and friendship.
Sandy Webster
Valentine’s Day is a time to celebrate love and “Happily Ever After.” When it comes to matters of the heart, Sandy Webster’s husband, Chris, gave Valentine’s Day a new meaning. For the happy couple, no other day is more special or significant. Thirteen years ago, Sandy’s Valentine’s gift from her husband was a new chance at life-- in the form of a donated kidney.
Webster was only 10 years old when doctors told her she had a rare disease, Heinloch-Schonlein Purpural, which attacks the kidneys. She received the first kidney from her dad in 1977 and went on to lead a normal and healthy life, which included finishing high school and college, marriage and the birth of a child.
Then her luck turned.
The transplanted kidney that had functioned so well for decades failed. She needed a new one or she would have to undergo a regimen of dialysis treatments. Her husband of 18 years came to her aid and donated one of his kidneys to her on Valentine’s Day. “I feel extremely lucky to have such an extraordinary husband and supportive family… I draw strength from them and the many fellow recipients I have met through competing in the NKF’s U.S. Transplant Games,” says Sandy, who has won numerous medals in tennis at the Games.
She welcomes the opportunity to meet others who’ve been through similar experiences to her own. “When you look out at a crowd of thousands and thousands of people, and realize that everybody there has had a transplant, it is really an emotional moment. When you take it one step further and acknowledge that all of those people would not be there if it were not for the organ donors, it’s truly incredible. Valentine’s Day is my day to express my thanks and love to my organ donor and the Transplant Games are an opportunity for all recipients to express our collective gratitude to all organ donors.” Sandy says.
Research Profiles
Anil Chandraker
By the time Anil Chandraker graduated from Glasgow University Medical School, he couldn’t wait to leave medicine behind. “I had a dreadful time as an intern,” says Chandraker, 44. “I wanted nothing to do with medicine. Except that I had to earn a living until I could find what I did want to do.” His boss suggested he moonlight as a fellow in kidney diseases. Disenchanted, but broke, he took the gig. And fell completely in love. “Not only did I want to become a doctor, but I wanted to become a nephrologist!” says Chandraker, now an assistant professor of medicine at Harvard University Medical School and director of the transplant clinic at Brigham and Women’s Hospital. He divides his time between teaching, seeing patients and research.
A 2006 NKF grant recipient and previous recipient of the NKF Young Investigator Award, Chandraker used the funding to study the effects of a certain group of antibiotics, called quinolones, on the BK virus, in transplant patients. Normally, the BK virus isn’t a problem for the general population, he says. In fact, it wasn’t until the early 1990s that increasing numbers of transplant patients were being diagnosed with the BK virus, most likely due to usage of stronger immunosuppresent drugs. Immunosuppresents are crucial to stop the body from rejecting the organ, but the drugs also weaken the immune system, which can allow the BK virus to take hold. The virus can lead to BK nephropathy, causing half of transplant patients to lose the organ within six months. Among the many fascinating aspects of his research is that antibiotics kill bacteria, not viruses, yet the quinolones seem to work on the BK virus. A colleague at the University of Maryland was impressed enough with Chandraker’s lab results to try the antibiotics on 10 tranpslant patients with the BK virus. The antibiotics worked on seven. Chandraker cautions that this was an uncontrolled study, but the enthusiasm is clear in his voice. “Whenever I see a problem clinically, I want to crack it,” says the father of nearly nine-year-old twin girls, and husband to an immigration attorney. “That’s the whole reason I’m in research: We can always do better for our patients. We must do better for our patients.”
Bonnie Schneider
If you want to get something done, give it to a busy mom to handle. Nearly four years ago, Bonnie Schneider’s tow-headed 13-year-old son Eddie told her his urine was the color of “coca-cola.” It was blood. Soon afterward, he was diagnosed with IgA Nephropathy, a progressive and incurable disease that results in the destruction of the kidney filters through inflammation. There is virtually no treatment for the disease which has a fairly clear and tragic trajectory. In most cases, the patient’s kidneys fail within a decade or so, requiring dialysis for survival.
For Bonnie, who along with her detective husband, Ed, lives in Wall Township, a New Jersey shore community, the final blow was learning that there was no ongoing research into the disease.
“There really wasn’t anyone doing research on IgA Nephropathy—what causes it, how to prevent it or even how to diagnose it earlier, much less how to treat it,” says the mother of five, “I got a lot of shoulder-shrugging and head-shaking, but no answers. This was my kid. I had to do something!”
Bonnie, 48, quit her marketing job in New York City and went to work to help Eddie and others like him. Within six months, she had put together a 5K Walk, where more than 1,000 participants raised $40,000. Schneider phoned Dolph Chianchiano, Senior VP for Research at the National Kidney Foundation and said, “I have 40 grand burning a hole in my pocket and I want to bring it to you, but I want it earmarked specifically for IgA Nephropathy!” Who could argue with this mom? In May, Schneider hosted the fourth annual walk and for the first time, runners participated. So far, the event has raised nearly $100,000 for IgA Nephropathy research.
Celine Berthier at the University of Michigan has been the recipient of a NKF Young Investigators grant to study IgA Nephropathy. “I’m going to visit her in the lab,” says Schneider. “I don’t want to breathe down her neck. She knows what she’s doing. I just want to meet her and let her know that these aren’t just cells in a petri dish. This is a disease that affects Eddie!” For his part, at 16, Eddie is a high-achieving and beloved student at his parochial school. He loves to surf and longs to grow up and work for his hero, Apple founder Steven Jobs. “Everybody loves Eddie,” says his mom. “Teachers, parents, kids. And Eddie likes everybody. Except me. He’s not crazy about me right now. But, hey, he’s 16.”
Celine Berthier
From the time she was a little girl, Celine Berthier loved “very small things” from blades of grass to bugs. She was a budding researcher even then, destined to peer at very small things under a microscope. But the dye wasn’t cast until she was 19, and as part of her school curriculum in Bordeaux, France, Berthier interned with a pediatric geneticist.
“I was so impressed with her and I asked her ‘what can I do to work as you do?’” recalls Berthier, 33. “She answered that I shouldn’t become a doctor-‘We have plenty of those! We need biologists and scientists. They are the ones who really help people!’” That inspiring doctor died a short time later from breast cancer, but she lives on in Berthier who earned her PhD in Biochemisty/Molecular Biology from Bern in Switzerland in 2006.
Thanks to her strong background in molecular biology and nephrology, wherein she described novel, regulated pathways in chronic renal transplant failure and polycystic kidney disease, Berthier is now concentrating her considerable talents on exploring the molecular mechanism of IgA nephropathy, using tissue taken from people who have the progressive and incurable disease that results in the destruction of the kidney filters through inflammation.
There is virtually no treatment, and those who have IgA nephropathy eventually end up on dialysis. What’s more, there has been very little research into this disease. Enter the NKF and Berthier. “We know virtually nothing about this disease,” says Berthier. “I really want to understand why it happens and then find out how to detect it earlier. Now, we only know it exists when it is already destroying the kidneys. I could not do this work without this grant.”
Berthier, who is single, spends most of her time in the lab, but she also dotes on her cat, Ungaro, and loves attending her Wednesday night French Talk get-togethers. She misses her family and hopes to eventually return to Switzerland, which she finds “peaceful and quiet,” and where she loves to hike in the snow. In the meantime, she’s knitting scarves, and trying to rally during icy and windy midwestern winters. “Waiting for the bus,” Berthier says wryly, “is sometimes not easy.”
Christopher Keller
No matter what the objective, you always want Christopher Keller on your side. His favorite sport is rock climbing because it requires teamwork and trust. He’s earnest, smart, empathetic and driven. Oh, and extremely loyal. He loves his pharmacist wife and will do almost anything to help her, including spending hours at the mall because his social 9-month-old son Jack sobs at home, but smiles nonstop in Nordstrom’s.
So, it’s perfectly in character that Keller chose to specialize in the kidney over such “A-list” organs as the heart or brain. “The kidneys are so challenging and complicated and fascinating, just like human beings,” says Keller, 30, a postdoctoral fellow at the University of California at San Francisco. The human beings Keller is determined to help are those with kidney disease. “They are the sickest of patients and they count on you, so you want to do everything you can for them.”
Keller’s clinical research focuses on the associations between inflammation, heart disease and early kidney disease. “We know that inflammation is a key cause of atherosclerosis [hardening of the arteries], leading to heart attacks and strokes,” he explains. “We are concerned that inflammation may also lead to kidney damage. We are looking to see if people who have evidence of early markers of inflammation in the body also have evidence of faster progression of kidney disease than people who do not have evidence of inflammation. None of these people have advanced kidney disease because we are trying to identify predictors of kidney function decline before it actually occurs.”
Dr. William Henrich
Dr. William Henrich welcomes a challenge. He chose the field of nephrology because the physiology of the kidney is the hardest to understand of any organ in the body. “That’s precisely what made the field so appealing to me,” says Henrich, 61, with a smile. “I guess I’m a glutton for punishment.” As a medical student at Baylor College of Medicine in the early 1970s, he was deeply influenced by three brilliant professors who helped “unlock the mystery of renal physiology, making the challenge an incredibly fun experience.”
Shortly after graduating, Henrich received his first Research Fellowship grant—a gift from the National Kidney Foundation. This award enabled him to spend two formative years from 1976–78 in the lab conducting one of the first studies ever to highlight the effect of non-steroidal analgesics (NSAIDs) on kidney blood flow and filtration rate. While learning about the impact of over-the-counter (OTC) painkillers on the kidney, Dr. Henrich learned something very important about himself—that he would never stop doing biomedical research, no matter how high up the professional ranks he climbed.
Perhaps one of the reasons he came to that conclusion is because his research had such a gratifying outcome. Before he began, most medical experts thought NSAIDs were benign in terms of affecting kidney function. His study showed that readily-available OTC painkillers can cause kidney failure under very common conditions. He identified patients who were most at risk for developing analgesic-induced kidney failure, including the elderly and people with heart and liver problems.
Over the years, Henrich continued studying the issue. He even caught the attention of the FDA who invited him to draft language for the packaging insert of numerous OTC painkillers, warning doctors and patients of the threat of kidney damage. “It’s wonderful to see the tangible link between the physiology I observed in the laboratory and have it be relevant in the prevention of kidney failure.”
Immediate Past President of the American Society of Nephrology and currently Dean of the School of Medicine and VP of Medical Affairs at University of Texas Health Science Systems, Henrich jokes that even while administrative duties conspire to take over his life, he has truly never abandoned his love of research. Despite being the lone doctor in a family of lawyers, this soon-to-be grandfather is still passionate about nephrology for the same reasons he entered the field so many years ago. He recently led a large study on analgesics that was published in a major medical journal.
Henrich credits the NKF grant with setting him on a course of biomedical investigation that has been sustained throughout his career. “I will always be very grateful to NKF for the support I received at the beginning of my career. At that time, NKF was the go-to place for research support for fellows. NKF has set a leading example that other major organizations have since followed . . . the research program is truly a point of pride for NKF, having launched so many careers in clinical and basic research that are ultimately touching the lives of thousands of patients.”
Kerri Cavanaugh
Kerri Cavanaugh loves blending the comforting logic of hard science with the glorious messiness of human behavior. Cavanaugh, 34, got hooked on the human psyche while at Dartmouth, from which she graduated Cum Laude with a degree in chemistry and a minor in psychology. As part of a psych class assignment, she hit the streets with a questionnaire and asked strangers about “their sun care behavior.” Sound a shade on the light side of science? To Cavanaugh, it was invaluable training and it has served her well.
Now at Vanderbilt University Medical Center, Cavanaugh is passionate about being a nephrologist. “It’s a fantastic sub-specialty,” she says. “It involves a complex disease, multiple treatments, an ever-changing field... it’s very exciting! And, as a nephrologist, I can establish very deep relationships with patients.” Cavanaugh recently received a National Kidney Foundation Young Investigator Award to study health literacy and numeracy. Translation: How patients’ reading and math skills help or hinder their ability to manage a complex disease. She is using the NKF grant to understand how dialysis patients control the amount of fluid they drink between dialysis sessions.
“This is very important because patients who take in too many fluids and gain too much weight have a higher risk of dying than those who control their intake of fluids,” she says. The research will tell her where the breakdowns occur. For example, do patients understand clearly how much fluid they are allowed to drink, why the limits exist and what happens if they overdo it? Solutions might include an education class geared specifically to that one crucial aspect of health management. Cavanaugh, who also sees patients and teaches, recently gave birth to son No. 2. His 2 year old brother was already keeping her and her surgeon husband well-occupied. Still, she remains tireless in seeking creative and effective ways for kidney patients to take control of their care. “For complex diseases such as kidney disease, this can be quite challenging,” she says, “but if we can help patients not simply stay alive, but enjoy a good quality of life, well, that’s extremely rewarding.”
Holly Kramer
Like many kids, Holly Kramer occasionally begged her mother to let her skip school. Unlike most mothers, however, Carol Mattix gave in to her daughter’s pleas. After all, the 12-year-old wasn’t angling to spend the day staring at the tube or hanging out at a mall. She wanted only to accompany her mother, a dialysis nurse, on home visits to the kidney patients whose lives depended on her care and expertise.
“I loved watching my mom work, and I got to know the patients really well,” she recalls.
Now at 37, Holly Kramer is a nephrologist and researcher who is engaged in
life-saving work of her own. A recipient of a National Kidney Foundation
Young Investigator Grant, Kramer is trying to learn why African Americans
have a substantially higher risk factor than that of Caucasians for kidney
disease related to high blood pressure. To determine whether the increase is
caused by genetic or environmental factors, such as poverty and access to
health care, Kramer is collecting and comparing blood, urine and DNA
samples from black adults in Nigeria, Jamaica and Chicago. She plans to
present her preliminary research findings to the National Institutes of
Health, which she hopes will fund further studies.“The hardest thing in clinical research is to get that first start, when you can begin to
accumulate data,” says Kramer. “I couldn’t have even begun to do this
research without the support I got from the National Kidney Foundation.”
Support second only to that which came from a certain dialysis nurse. “My
mom is very proud of me and the work I do, “ says Kramer. “And, of course,
she takes the credit.”
Jeffrey Fadrowski
Jeffrey Fadrowski, an assistant professor of pediatrics at Johns Hopkins University Medical Center, spends 80 percent of his time investigating the link between chronic kidney disease (CKD) in kids and their exposure to the heavy metals lead and cadmium. But, it’s what he does with the remaining 20 percent of his professional time that fuels his passion for the rigors of research. “My patients,” he says, “are my inspiration and motivation!”
Previous research has shown that exposure to high levels of lead and cadmium is harmful to kidneys. Recently, many studies have also implicated exposure to low-level or non-toxic amounts of lead and cadmium with CKD and its progression. “As exposure to lead and cadmium occurs commonly, evidenced by almost the entire U.S. population having some measurable amount of these substances in their bodies, further research is important,” says Fadrowski, who in addition to being a doctor, holds a master’s degree in epidemiology from the Johns Hopkins Bloomberg School of Public Health.
“There are reasons why children might be more susceptible to the effects of lead and cadmium. Discovering an association might help us learn more about chronic kidney disease, including ways to slow down the typically inevitable progression of this disease in both children and adults.” Reared in Upstate New York, there are no doctors in Fadrowski’s family, but he was certainly influenced by a grandmother and an aunt who were pediatric nurses. Fadrowski decided to be primarily a researcher because as he was treating patients he kept wondering, “‘Is this the best way to do this?’ One wishes that more information about a disease or treatment existed. Research is the only way to answer these questions."
He is grateful that the NKF understands that fact. “Without the support, a lot of interesting research ideas might not get investigated and many investigators might not be able to continue to pursue a career in research.” Unlike many doctors, Fadrowski enjoys dealing not only with his patients, who range in age from infancy to 22 years, but with their parents too. “I chose to take care of kids because they’re extremely resilient,” says Fadrowski, who is single and loves to travel to such disparate and far flung spots as Galapagos and Vietnam. “They rarely let their kidney disease define them. But, I also enjoy dealing with their parents, answering their questions, telling them the truth about what’s going on. Is that sappy?” Hardly.
Julie Goodwin
Julie Goodwin has a built-in bias. She prefers children over adults. At least, when it comes to illness. “Children have no control over their illnesses, and in some cases, adults do,” says Goodwin, a fellow in pediatric nephrology at Yale New Haven University Hospital. “And yet, children handle illness in such a more graceful way, which makes me want to help ease their pain and find cures for them.”
To that end, the recently married Goodwin, who admits to spending more time with her lab mice than her beloved husband (but she’s working on it!), is intent on finding out why steroids cause high blood pressure. “Steroids are a common treatment for many illnesses in pediatric nephrology - from kidney transplant to lupus to nephrotic syndrome,” says Goodwin, who was reared in Needham, Mass. “There are very few studies which evaluate medication in children and even fewer which examine specific outcomes related to a particular disease, such as in kidneys.”
Goodwin, 32, is thrilled to have received an NKF grant because the money allows her the freedom to do her research. It’s time well spent: She has discovered that a receptor in the kidney, called the glucocorticoid receptor (GR), may be important in mediating the increased blood pressure. She has managed to ‘knock-out’, or eliminate, in one group of mice, the GR in the vascular smooth muscle, the muscle that lines the arteries and causes them to contract and relax. The lab mice without GR do not get high blood pressure when given steroids. That could mean, she posits, that GR in the vascular smooth muscle may be one of the sites through which steroids cause high blood pressure.
“It’s very exciting,” she says. “If we can determine why steroids cause hypertension, we can develop therapies to prevent it. That would be so wonderful!” The bonus: She would spend a bit more time with her new husband.
Kamyar Kalantar-Zadeh
By anyone’s standards but his own, Kamyar Kalantar-Zadeh is a workaholic. “No, I am not,” insists Kalantar, who, on his wedding day saw patients in San Francisco, flew to New York for the nuptials and was back in California on his honeymoon weekend to resume his rounds. “I sleep six hours a night, but I am trying to reduce that.”
For his passion and energy, chronic kidney disease patients everywhere should be extraordinarily grateful. A recipient of a National Kidney Foundation Young Investigator Award, the 41-year-old nephrologist is determined to cut the mortality rate of dialysis patients. “One out of every five patients die annually,” says Kalantar, associate professor of Medicine and Pediatrics at UCLA’s David Geffen School of Medicine. “Of course, the paradox is that dialysis is a life-saver. But that doesn’t mean we can’t lower the mortality rate -- and we will.” Believe him.
Kalantar was nearly finished with medical school in his native Iran, when he was forced to flee to Germany, where he had to start his studies all over again. He mastered the language, completed med school and passed licensing exams, normally a seven year ordeal, in two-and-a-half years! While doing clinical research in Nuremburg and San Francisco, he also picked up several other degrees, including a Ph.D in Public Health from Berkeley. He has used the $100,000 NKF gift to create and head a research team of UCLA graduate students that analyzes data from patients who receive dialysis from the nation’s second largest provider. “This money has enabled us to do so much, including giving us the data we need to be able to apply for federal funding,” he says. “The point is to understand how to improve care of dialysis patients and to improve the understanding of doctors of the risk factors these patients face.”
When he’s not publishing and presenting papers, seeing patients or overseeing research, Kalantar, well, works some more. Though he adores his wife, a pharmacist, and their three little girls, relaxing makes him “anxious. “I can’t help it, I love what I do and I have a wife who understands that,” he says. Not everyone does. “I always take my oldest daughter to Saturday ballet class,” he says. “I always notice I’m the only one there with a laptop.”
Robyn Cunard
Robyn Cunard had all but made up her mind to become an engineer, but when life whispered a different plan on a roadside in Upstate New York, she paid attention. Now a gifted researcher and recipient of many prestigious awards, including two National Kidney Foundation grants, Cunard’s career path changed when at age 16, she became the youngest member of a volunteer ambulance corps in tiny Goshen, New York, where she then lived.
“We were called to a tanker accident and the guy was pinned inside,” she recalls. “My job was to hold his hand while the fire guys came in to extract him. It felt right holding his hand, comforting him.”
The aspiring engineer was no more. Her future was medicine. These days, the 39-year-old Cunard, a staff physician at the Veteran’s Administration Health Care System San Diego and an assistant professor of medicine at the University of California, San Diego, is a nephrologist who devotes her time to researching PPAR ligands. Drugs already taken by many people to treat diabetes and high lipids/cholesterol, Cunard believes these agents may also help those with kidney disease. She has discovered that PPAR ligands are anti-inflammatory agents, which help fight infections in the body. In her experiments, they have slowed the progression of inflammatory kidney disease in mice.
“I love this research,” she says. “It’s very exciting because it’s practical and clinically relevant.” Cunard, who lives with her journalist husband and their two babies, says she could not have done this research without the NKF. The first grant, in 2002, paid for a lab technician. “She is still with me, I’m proud to say,” Cunard reports, then adds wryly, “though I’m very hands-on.”
The NKF’s most recent grant, the Clinical Scientist Award, pays part of Cunard’s salary, enabling her to concentrate on science. “The NKF has given me the most important gift: protected time,” she says, gratefully. “Research is impossible without it.”
Scott Cohen
During his residency at Duke University, George Washington University Renal Fellow Scott Cohen grew attached to a dialysis patient named Fannie. The then-25-year-old resident admired the 60 year old patient. He liked how kind she was and how she handled the challenges imposed by her various diseases with dignity and a lack of self-pity. Cohen also noticed how much it cheered her up when he spent extra time with her, and how it helped her family when he took the time to explain Fannie's condition and treatment. "She had very little social support and was very sick," says Cohen, now 29.
Fannie passed away, but Cohen, a Miami native, who graduated from the University of Miami School of Medicine, decided to honor Fannie and all dialysis patients by designing the first-ever pilot study of a social support group intervention to be carried out in a rigorous, randomized fashion. Translation: He wants to prove scientifically what he and many others believe, that dialysis patients suffer a greater degree of depression than the general population and that a social support group intervention will help improve their emotional well-being and quality of life, as well as improve their physical outcomes.
"We believe social support can improve virtually every aspect of patients’ health and care," he says. "We believe dialysis patients who have received a social support intervention will have decreased levels of depression, more hope, will be more likely to take their medication, listen to their doctor's advice, come to dialysis, eat better, and talk with others with chronic kidney disease. All these factors may increase long-term survival." Cohen, who also is working toward his MPH degree at George Washington University School of Public Health, says his NKF grant has helped him recruit 40 patients in a randomized controlled study, in which 20 participate in support groups made up of 5 to 6 patients, and the remaining 20 dialysis patients receive the standard care. The study has been underway for six months, and Cohen hopes to expand it soon to the Veteran's Administration Hospital. Cohen's dream is that every dialysis center will have a support group for its patients.
Steven Brunelli
With three kids under age two, Steven Brunelli has discovered that the best way to help his scientist wife and attend to his own work is to take their newest family member, two-month-old insomniac ,Tyler, to the lab at night.
In the wee hours, Brunelli bounces his boy on his knee while analyzing data and explaining his passion to uncover why dialysis patients have such a high incidence of cardiovascular disease—10 to 30-fold higher than the general population. “I’m disappointed in him,” quips Brunelli, 33. “He’s not very good at statistics.” That’s o.k., his dad has more than enough knowledge and dedication for the both of them.
Brunelli grew up in West Philadelphia with a probation officer father whom he recalls, “told me I wanted to be a doctor when I was very young. Not being very imaginative, I became a doctor.” Dialysis patients should be grateful. “Doing research that will improve the life expectancy and health of people on dialysis is my life’s work!” says Brunelli, Instructor of Renal, Electrolyte and Hypertension at the University of Pennsylvania. “That’s what this NKF grant is allowing me to do.”
Brunelli is focusing on the relationship between cardiovascular disease (CVD) and blood pressure fluctuations, which are far more frequent and dramatic in their ups and downs in dialysis patients than in others. More than half of dialysis patients die from (CVD), which includes heart attacks and strokes. That risk goes down dramatically after kidney transplant when blood pressure becomes less volatile. “I have come to believe that there is something about dialysis that is causing this burden of cardiovascular disease,” says Brunelli.
Using data from more than 10,000 patients who started dialysis between 2004 and 2005, he already has completed a study of long-term blood pressure fluctuations, those that occur over days to weeks. Now, he will begin to analyze these same factors for minute-to-minute fluctuations that occur during dialysis treatments. "If they have committed themselves to undergoing dialysis 12–15 hours a week, which is no picnic," says Brunelli, "then I can certainly commit myself to making their burden lighter!"
Zubaida Saifudeen
P53 has a singular pull on Zubaida Saifudeen. The 41-year-old assistant professor and PH.D. scientist at Tulane University Medical Center has spent a decade studying the powerful and mysterious protein and its role in kidney disorders. And she's not about to stop. Saifudeen is determined to unlock the secrets of the controlling and confounding P53. Long studied in cancer research -- missing or mutated P53 is found in about half of all cancers -- Saifudeen is at the forefront of looking at the protein in relation to its role in kidney disease.
"It's so gratifying," says Saifudeen, a member of Tulane's Developmental Nephrology Group. "We joke all the time about young scientists who come through here and want immediate gratification. It doesn't happen that way with P53 (or any research). It's both an extremely exciting and frustrating endeavor. But very worth it!"
With her NKF grant, Saifudeen has expanded her mouse models and experiments, key to determining answers that may help find the causes of several childhood and congenital kidney disorders, which would lead to possible treatment s. P53 regulates other genes and is necessary for growth, but it can go awry and cause cells to mutate. It also can do the opposite: stop cells from mutating.
"It puts the brakes on," explains Saifudeen, adding, "kidneys need P53 to develop normally, but what makes it go from normal to out of control? The 'why' of P53 drives me. It's extremely diverse and always surprising. I'm hooked."
The Bombay-born Saifudeen acknowledges, that if she didn't have a wonderful husband and two children (a boy, 8, and girl, 9), she might never leave her lab. In fact, the kids love visiting her at work.
"They get very excited and ask 'what's new with P53?'" she says, laughing. "P53 also happens to be a very popular topic at the dinner table. My daughter told me recently that she wants to be a scientist when she grows up. That's nice to hear."
Supporter Profiles
Alonzo and Tracy Mourning
Every basketball fan knows that on the court Alonzo Mourning, the all-pro center with the commanding presence, is a consummate team player. But that's a mere pick-up game next to the off-the-court teamwork
between Alonzo and his beloved wife, Tracy, when it comes to winning the fight against kidney disease. Beyond time, talent and money, the Mournings present a healthy and hopeful public portrait of kidney disease.
Alonzo was just 33 in 2000, when he was diagnosed with focal glomerulosclerosis, which was causing his kidneys to deteriorate quickly and without symptoms. For three years, with careful monitoring and proper diet and medication, Alonzo managed his disease without having to go on dialysis. Then, when his kidneys failed completely, a cousin gamely offered an assist in the form of a donated kidney.
The Mournings' gratitude is twofold, as are their twin passions on behalf of the National Kidney Foundation: Early detection and organ donation. "Early detection allowed me to live without needing dialysis or a transplant for three years," says Alonzo, now 40. "Through this time, I was able to return to basketball and, more importantly, do the things I love with my family." He and Tracy stress early detection, that is, going for regular check-ups. Tracy even made a public service announcement for the NKF about the importance of getting loved ones, particularly husbands, to see a doctor regularly. "It's hard to get family members to visit the doctor when they are feeling healthy and active; however, if people wait until they feel that something is wrong it might be too late!"
Alonzo and Tracy urge everyone to sign a donor card, and if they can find it in their hearts like his cousin Jason did, donate an organ to a desperate family, friend or stranger. "Everyone in need of a transplant is somebody's father, mother, son, daughter or friend, and that is more important than the game that I play," says Alonzo. "I only wish that all of the individuals who came forward for me would come forward with the same selfless act of kindness for others who are in desperate need of a transplant!"
Bill MacMillan
A kidney transplant gave Bill MacMillan’s beloved father-in-law an additional 14 years of life. “Precious time to get to know his grandchildren, and they him,” says MacMillan. “He was an amazing, dynamic man. That’s why the fight against kidney disease is so dear to my heart.” Since 1990, MacMillan, a director of Cargill Inc., a company his great, great grandfather started during the Civil War, has opened his heart, his wallet -- and his Denver home to the local NKF affiliate and national education and fund raising efforts.
His involvement began when he was asked by the local affiliate, the NKF of Colorado, Idaho, Montana and Wyoming, to chair a golf tournament. He joined the affiliate board for six years. During those years, MacMillan and his wife, Deb, helped create and began to host an annual Golf Sponsors Gala, a fundraiser that has drawn as many as 300 local and national leaders to the MacMillan home. “It’s something my wife and I loved to do,” says the 51-year-old MacMillan.
The couple also have co-chaired the affiliate’s Great Chef’s event, underwritten the annual Volunteer Recognition Program and opened up golf courses they own in Tucson for tournaments. Giving goes way back in this family -- and the MacMillans have imbued their four high school and college aged children with the importance of responsibility and generosity to those less fortunate. “Philanthropy has been discussed and practiced in my family for many generations,” says MacMillan, who is serving a second five-year-term on the NKF’s board of directors. “I will forever be tied in with the NKF, not only financially, but with my time. This isn’t a fad with us. It’s a lifelong cause.”
Helen Wang
Helen Wang’s fundraising goal of $50,000 for the 2007 GNY Kidney Walk was a monumental undertaking for just one individual… and on top of it all, it was a very personal one. Helen’s fiancé, Jimmy, is on dialysis, and so, to raise his spirits, she formed a Kidney Walk Team to raise awareness and funds to benefit the National Kidney Foundation Serving Greater New York. In the end, Helen raised over $62,000.
With a sudden gout attack back in 2000, after much testing and hospital rounds, they found out that Jimmy was experiencing kidney problems and in early 2005, doctors informed him that he would be needing a kidney transplant. He became depressed, despondent and didn’t know what to do, so Helen – ever the proactive wife-to-be – wanted to do something for him to lift his spirits.
“It was agonizing to see Jimmy suffer the way he was, so I realized that I needed to find something that would motivate him, and show him that there are many people in this world that love and support him,” Helen said. “He was at a point that he felt alone, scared and most of all, angry at the world that this was happening to him, so I contacted NKF Serving Greater New York and became involved with the Kidney Walk.”
Not only did she become a member of the Junior Walk Committee, but her Kidney Walk Team consisted of 129 people – the biggest individual team in GNY Kidney Walk history - including friends, family and coworkers from Deutsche Bank where both Helen and Jimmy work.
“I wanted to learn more about kidney disease, speak to people who have gone through what I am experiencing now and to find out what we can do to raise awareness about kidney disease,” Helen said. “The response to our fundraising efforts has been phenomenal, and the support for the Kidney Walk has clearly surpassed our expectations.”
Rich Stockinger
As president of the Patina Restaurant Group and longtime CFO for Restaurant Associates, Rich Stockinger spent lots of time crisscrossing the country and making big restaurant deals. Then, seven years ago, the peripatetic businessman came to a grinding halt. Scheduled for knee surgery, the Franklin, NJ resident got an "emergency" cancellation call from the hospital just 24 hours before the operation. When he innocently asked, “Is the doctor okay?” Stockinger was floored by the answer: “The doctor’s okay, Rich, but you’re not.”
Routine blood work showed there was something seriously wrong with Stockinger’s kidneys, and he was urged to see a kidney specialist immediately. “I was quite startled,” recalls Stockinger, 49. “I thought I was in excellent health.” His friends joked that he had been spending too much time with lawyers closing deals when he should have been spending time with doctors checking out his health. With a combination of support from his wife and three children, excellent medical care and lifestyle changes—including a low-sodium diet enforced by his youngest daughter, Christine, now 13—Stockinger managed to stave off kidney failure for five years.
“Christine was quite vocal,” he says, laughing. “She would pick up every packaged item, including in the supermarket, read the sodium content and announce that I was not allowed to eat it!” He didn’t dare argue with his little expert. Another family member, Stockinger’s sister, Susan, stepped in for the next chapter of his life—offering the life-saving gift of one of her own kidneys to her beloved brother. Since December 14, 2005, when he underwent the transplant, her kidney has been working just beautifully, Stockinger happily reports.
Once he knew he’d be okay, Stockinger decided it was time to make sure others got the chance he had. Though busy as ever, he made time to join the National Kidney Foundation’s Board of Directors. Talk about being a great sport: just 24 hours after having accepted the invitation to join the Board, Stockinger was asked to help raise $500,000 for the 2007 Kidney Walk in New York City. Of course, he said yes and the mission was accomplished.
Roy Malkin
When Roy Malkin was asked to be the Honorary Chairman of the 2006 Kidney Walk in Minneapolis, he agreed, but with one caveat: “The local NKF Division had established a fundraising goal of $75,000,” recalls the 61-year-old president and CEO of Minnesota-based Minntech Corporation. “I said that was totally unacceptable. We’ve got to raise in excess of a quarter of a million dollars!”
And Malkin meant it: this first-ever Kidney Walk brought in $275,000. He credits his 375 employees for the core of that success. “We mobilized our team, and the rest is history,” he says proudly. “Minntech Magic,” as the walk team was dubbed, began its efforts five months in advance, with employees being able to buy extra vacation days for a Kidney Walk donation of $50 per day for hourly employees and up to$175 for senior executives. Every subsequent month leading up to the event brought another team-building, fund-raising activity, including the chance to dunk the executives, Malkin, too, in a giant water tank.
Malkin, who runs on equal parts enthusiasm and pragmatism, was thrilled with Minntech Magic’s success, which all told, raised over $145,000 for the NKF. But Malkin insisted on giving the NKF far more than just money. His team members created a Corporate Walk Team prototype program, complete with CD. “It’s a mission for us,” he says. “We want other companies throughout the country to say, ‘we can do this, too; we can create the same level of enthusiasm and achieve a very positive outcome.’” Malkin added, “We’ve proven that you don’t have to be a huge company to be extremely effective!”
Malkin presented his prototype program at the NKF’s Kidney Walk Academy, an annual training program for those who organize local Kidney Walks. "I was pleased with the response, and I volunteered to go anywhere they needed me to get the word out", he said
A former Vietnam era combat and test pilot, whose hobbies now include building and flying seaplanes, Malkin also has personal reasons for supporting the NKF – his wife received a kidney from one of their daughters, and their other daughter was born with only one kidney. “But that by no mean is the driving factor for my involvement with the National Kidney Foundation,” says Malkin,. “It’s the NKF’s mission, its proactive prevention programs and the fact that each day the NKF provides “real time” assistance to those who suffer from kidney disease. Those activities and many more make all of us very pleased to be a small part of such a valuable endeavor.”
Stuart Bowers
Stuart Bowers, a senior executive at the Baltimore-based investment giant Legg Mason, believes it’s no big deal that he gives an abundance of time and money to the National Kidney Foundation, and he isn’t shy about asking those around him to do the same. “Most people think it’s hard to ask for money,” says Bowers, 48. “I don’t find it difficult. Not if it benefits the NKF.”
Fund raising for the Maryland affiliate of the NKF is a Bowers’ family tradition. Stuart’s father, David, a litigation attorney, was a polycystic kidney disease patient who was on dialysis for 18 years. “He just worked court dates around dialysis,” says Stuart. Dialysis didn’t keep David from serving as local board president or from fund raising either. In 2006, the Maryland affiliate established the Bowers Family Research Award for Polycystic Kidney Disease, which offers an annual $10,000 for research into polycystic kidney disease.
Stuart inherited the disease, along with the family commitment to the foundation. He, too, has served as board president and has been active on dozens of committees, from the Gift of Life Gala to the Golf Classic. Stuart was diagnosed at 18, but, unlike his father, never needed to go on dialysis. In 1998, he underwent a pre-emptive transplant with a kidney donated by his sister, Julie. “It was the scariest day of my father’s life,” Bowers recalls. “He had a daughter donating a kidney and a son receiving one.” Though their father died in 2000, his commitment to the NKF lives on through his children. “I can’t imagine not being involved,” says Stuart. “What can I say? It’s a family thing.”
