Gratitude: A Celebratory Benefit for the PKD Foundation

2016 Gratitude Honorees

Click on an honoree to read their story.

Philanthropist & Fundraiser

Scott Goodman

Scott Goodman, Chicago

Scott GoodmanScott Goodman

Philanthropy and Fundraising

If there's one thing Scott Goodman understands, it's how to make things happen.

As founding principal of one of Chicago's hottest commercial real estate investment and development companies, he's known as a mover and shaker – a developer adept at taking older properties and breathing new life into them. Few obstacles have stood in the way of his success.

So when his son, Sam, was diagnosed with autosomal recessive PKD (ARPKD) at birth, Scott did what he does best: take action. He applied that same energy to the fight to end PKD. Seeking information about the latest research, he connected with the PKD Foundation as a resource. Scott served on the PKD Foundation's Board of Trustees from 2005 to 2014 and as chairman of the Board from 2012 to 2014, helping to lead the organization to new heights of success.

He does more than "talk the talk." Scott "walks the walk" by organizing one of the biggest PKD Foundation Walk teams in the country raising more than $450,000 in nine years. He's also rallied his workplace to help end PKD and in 2012 and 2014 the company donated funds from its annual Sterling Bay Benefit Bash to the PKD Foundation to the tune of nearly $180,000.

Sam received a new kidney in 2014 from his mother, and everything changed for the Goodman family. "It's a miracle." Their personal urgency to end Sam's suffering diminished with a successful transplant, but the need for continued research remains. "For better or worse, PKD has been a part of my life for over 24 years now," says Scott. "I'm grateful that Sam's a healthy, happy kid now. But it's absolutely essential to continue to fight PKD, fund research and find treatments and a cure."

Thanks to his example of leadership, generosity and fundraising, the future is brighter for generations to come.

Fundraisers

Jen and Pete St. Aubin

Jen and Pete St. Aubin, Chicago

Jen and Pete St. AubinJen and Pete St. Aubin

Fundraisers

At a 25-week ultrasound, Pete and Jen St. Aubin received the unthinkable news that their baby likely had autosomal recessive PKD (ARPKD). When Sophie was born, she fought hard to stay in the world long enough – 12 hours – for her parents to hold her and tell her how much they loved her. They also promised Sophie that they would do whatever they could to help other babies suffering from such a horrible disease.

"In the midst of our immense sadness, we began receiving requests from people who wanted to help," says Jen. "We sent out an email that told Sophie's story and included a photo of her."

The impact is staggering. Since September 2014, Sophie's tribute has raised more than $100,000 to date, thanks in part to the Give Change campaign at Jen and Pete's workplace, The Private Bank. "It has been so moving to see how many people care," Jen says. "So heartwarming to see what an impact Sophie has made."

The St. Aubins are moving forward with plans to start a family and are exploring preimplantation genetic diagnosis for ARPKD for couples at risk of bearing a child with the disorder. The procedure allows genetic testing to be performed on early embryos before implantation for the purpose of selecting only those embryos that are unaffected by ARPKD for uterine transfer.

"We knew nothing about the disease until our doctor first said it," Pete says. "We feel strongly about staying involved and spreading awareness of ARPKD and the impact it has, not only on the affected child, but the whole family. We are staying active in events and advocacy, which is extremely important."

But mostly they are giving thanks. The opportunity to raise money was therapeutic for them and a helpful part of their grieving process.

"We're so grateful that some good came out of our situation and for the overwhelming support from our friends, family and colleagues."

Physicians & Researchers

Arlene Chapman, M.D.

Arlene Chapman, M.D., Chicago

Arlene Chapman, M.D.Arlene Chapman, M.D.

Physician

Most of Dr. Arlene Chapman's career has been devoted to improving the lives of patients with polycystic kidney disease. Currently, she is director of the Section of Nephrology in the Biological Sciences Division at the University of Chicago. Her years of experience in clinical research have led her to also be the Director of the Clinical Resource Center for the Institute of Translational Medicine, a national Clinical and Transitional Science Award program at the University of Chicago. Prior to joining the University of Chicago in 2015, Dr. Chapman served as Professor of Medicine in the Renal Division at Emory University School of Medicine, Associate Program Director of the Renal Fellowship Training Program, and Program Director for the Clinical Research Network of the Atlanta Clinical and Translational Science Institute.

Dr. Chapman is a graduate of the McMaster School of Medicine. She completed her internal medicine residency training and nephrology fellowship training at Georgetown University School of Medicine and her clinical research fellowship training at the University of Colorado School of Medicine. She joined the University of Colorado faculty in 1988 and remained there for ten years before being recruited to Emory University. Her research has focused on many different aspects of autosomal dominant polycystic kidney disease (ADPKD) including the pathogenesis of hypertension, extra-renal manifestations of this disease, the development of imaging biomarkers for predicting outcomes that are now supported by the FDA and mechanisms of renal and cyst formation in this disease. These efforts have led to the support for conduct of several important clinical trials that have shown that aggressive blood pressure lowering is beneficial early in hypertensive patients with ADPKD and that inhibition of the vasopressin V2 receptor is also helpful in slowing progression of disease.

Renowned for her work in kidney disease research, Dr. Chapman has received continuous funding from the National Institutes of Health for more than 18 years. She has published nearly 170 peer-reviewed publications and book chapters, and previously served on the editorial boards for American Journal of Kidney Diseases, Kidney International and the Journal of the American Society of Nephrology.

In her work for the PKD Foundation, Dr. Chapman was on the Scientific Advisory Committee from 1996 to 2005 and served as vice chair from 1998 to 1999 and chair from 2000 to 2001. Dr. Chapman was a member of the Foundation's Board of Directors from 2000 to 2002. During these years, Dr. Chapman was instrumental in writing books for patients with PKD and directing the scientific content of the PKD patient conferences.

"The goals and mission of the PKD Foundation and their dedication to supporting researchers hoping to advance treatments and ultimately a cure for ADPKD align with what I want to see happen. It has been a gratifying association," she says.

Much has been accomplished under her legacy of leadership.

"During that time we developed the PKD Foundation fellowship portfolio to fund rising stars in PKD research, and we launched the first ever Federation of American Societies for Experimental Biology (FASEB) conference on PKD with support from the PKD Foundation," says Dr. Chapman. FASEB is important because it brings together some of the brightest scientific minds from around the world working on basic and translational research, which is most likely to lead to effective therapies and ultimately a cure for PKD.

She also published a handbook of food and health tips for anyone living with kidney disease or looking to protect their kidney health.

To encourage transparency and the sharing of scientific findings funded by the Foundation, Dr. Chapman championed expanding the patient convention program to include presentations by fellowship and research grant recipients – now a regular part of the Convention agenda.

She believes collaboration is a cornerstone to success, and has actively represented the PKD Foundation with other kidney-related organizations all working together toward a common goal.

As an educator, Dr. Chapman is a frequent discussion leader in patient education programs on everything from kidney stones to the latest in clinical trials.

She's optimistic about the future. "I think we have a good chance at developing therapies that will actually slow or halt the progression of this devastating disease."

Vicente Torres, M.D., Ph.D.

Vicente Torres, M.D., Ph.D., Rochester, Minn.

Vicente Torres, M.D., Ph.D.Vicente Torres, M.D., Ph.D.

Physician and Researcher

Dr. Torres' esteemed career has been focused on cystic kidney diseases including PKD. He is a consultant in the Division of Nephrology and Hypertension, Department of Internal Medicine at Mayo Clinic in Rochester, and director of the Mayo Clinic Translational Polycystic Kidney Disease Center, supported by the National Institutes of Health (NIH) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). He is a professor of medicine, Mayo Clinic College of Medicine, and holds the distinguished Robert M. and Billie J. Pirnie Professorship in Kidney Research in Honor of Dr. Michael J. Krowka.

Dr. Torres earned his medical and doctoral degrees at the University of Barcelona, Spain. He completed an internship and a research fellowship at Hospital Clinico y Provincial de Barcelona Faculty of Medicine. He further completed a research fellowship, an internship and residencies in internal medicine and nephrology at Mayo Clinic, and joined the Mayo Clinic staff in 1979.

In addition to medical practice, Dr. Torres conducts research on cystic kidney diseases, inherited kidney disease and renal neoplasms, parenchymal renal disease and renal transplantation. He consistently publishes in high-impact scientific journals, and serves on editorial boards with reviewer responsibilities for several prominent publications. Dr. Torres frequently gives presentations on his research, domestically and internationally, and has authored numerous peer-reviewed journal articles, book chapters and abstracts.

In recognition of his work, Dr. Torres has received many awards and honors, including the Research Career Achievement Award and the Landmark Contributions Award conferred by Mayo Clinic; and the Lillian Jean Kaplan International Prize for the Advancement in the Understanding of Polycystic Kidney Disease, awarded by the PKD Foundation and International Society of Nephrology.

Dr. Torres became involved with the PKD Foundation in 1985 when co-founder Dr. Jared Grantham invited him to participate in the Foundation's 1st International Workshop Kansas City to speak on the epidemiology of PKD. He served in the Scientific Advisory Board (SAC) of the Foundation during 1992-2004, as Vice-Chair from 2000-2002 and as Chair during 2002-2004 when he also served on the PKD Foundation's Board of Directors.

"My participation in the activities of the Foundation has been motivational and has helped me keep abreast of developments in the field of PKD. I have also received funding from the PKD Foundation at a time when I had no other funding source for my research." He is hopeful about an increasing number of promising treatments that need to be tested in clinical trials, and innovative tools to enhance the feasibility and implementation of these trials.

In addition to his clinical and research activities, Dr. Torres is active in education. He holds full faculty privileges in Biomedical Engineering at Mayo Graduate School, Mayo Clinic College of Medicine. Dr. Torres' memberships with professional organizations include several NIH/NIDDK study sections and committees and with the PKD Foundation's SAC.

 

Volunteers

Tracee Hicks

Tracee Hicks, Chicago

Tracee HicksTracee Hicks

Volunteer

Tracee Hicks is an extraordinary volunteer. She is driven, not just for herself as a PKD patient, but as the daughter of a mother diagnosed at 42 who eventually went on dialysis and received a kidney transplant. "She's celebrating 28 years with her transplanted kidney!" says Tracee, who is grateful that her mother has been able to experience the simple joys of watching her children and grandchildren grow up.

Like her mother, Tracee was diagnosed with PKD at age 42. It was then she decided to get involved. Armed with a desire to make a difference and a knack for relationship building, Tracee joined the PKD Foundation Chapter in Chicago in 2004 and through 2010 served as the Chicago Walk for PKD Coordinator. Together with Chapter Coordinator Dave Kappas, they were a volunteer force to be reckoned with.

"The timing just worked well for me to be able to devote a lot of time and energy to the Walk," she says. "Like anything else, in order to be successful, a significant amount of hard work, along with some luck, is required. Without event planning experience, I dove in and relied heavily on family, friends and neighbors on Walk day. However, it was the strong bond that Dave and I developed that really was the foundation for success. Our shared ambition and dedication to raising funds for research is what drove my unwavering commitment to the Chicago Walk for PKD for seven years."

Her passion proved contagious, and the momentum built from there.

"As the top net Walk in the country from 2005 through 2010, we knew we were touching a lot of lives and making an impact," says Tracee. Under her leadership, Chicago Walk revenues ranged anywhere from $175,000 to $235,000 annually.

But there's much more to it for Tracee.

"I was rewarded by the camaraderie and collective effort of the approximately 1,000 people who attended the Chicago Walk during those peak years," she says. "We all felt the connection of our community coming together to do our part to raise awareness and the necessary funding for research."

From 2007 to 2008, Tracee served on the Foundation's Strategic Planning Committee, offering valuable insights and guidance. To recognize her contributions, in 2008 the PKD Foundation honored her with the Gordon Flesch Humanitarian Award honoring a volunteer who devoted tremendous amounts of time and energy to further the mission of the Foundation.

Dave Kappas

Dave Kappas, Chicago

Dave KappasDave Kappas

Volunteer

Activity in the Chicago PKD Foundation Chapter was sagging when Dave Kappas's cousin – a Coordinator in the Twin Cities –approached him about resurrecting the once vibrant Chapter.

Dave had been aware of the Foundation through his sister and other relatives. After looking into it, he decided it was a good time in his life to step up and get involved. And step up he did – Dave had several ideas of what was necessary to get the Chapter going again, but he's also quick to credit his longtime fellow volunteer, Tracee Hicks, for the Chapter's revival.

"Meeting Tracee and having her agree to be the Walk Coordinator was one of the most fortunate things for me and the Chapter," said Dave. "Together we were able to grow the Chapter and Walk tremendously through personal communication, relationship building and fighting for what we believed in."

Under Dave and Tracee's leadership, PKD awareness grew, a sense of community among patients and their families blossomed, and the dollars raised for PKD research grew by leaps and bounds.

He admits, though, that volunteering can have its challenges.

"I've often said that volunteering is simultaneously the most rewarding and frustrating thing a person can do. For me, though, the rewards are far more significant than the frustrations." By the fall of 2005, Dave was asked to join the PKD Foundation staff as a Regional Volunteer Manager and helped train other volunteers across the Midwest to develop Chapters in the same way he and Tracee had.

Dave also has an amazing career as a professional voice talent and emcee which provides him a solid foundation from which to make his voice heard. His favorite events are athletic events and charity fundraisers, where he can connect with participants and share the information they most need to hear.

When speaking of his volunteer experience and interaction with other volunteers, Dave says, "The ability to help someone feel they are part of something bigger than themselves, seeing them find hope where there was only frustration, and watching as they took charge of what they were dealing with was simply inspiring."

 

2015 Gratitude Honorees

Philanthropists

KidneyTexas, Inc. of Dallas

The Gammill Family of Marble Falls, Texas, and Oklahoma City

Gammill Family Honored for Support of PKD Foundation

Lee and Susan GammillLee and Susan Gammill

Lee Gammill and family continue his father's legacy of advocacy and the search for treatments and a cure for PKD

"My dad was in insurance—he was the president of an insurance association around the time he began getting involved with the PKD Foundation," Lee Gammill shared. 

"He thought something needed to be done to help find answers for people with PKD, so he and a group of his friends set out to do something."

Lee's father, John Gammill, was born in 1923 in Devol, Okla. A proud Oklahoman until his death in 1994, John loved his native state and promoted it tirelessly throughout his life and career. In 1956, he founded Reserve National Insurance Company, and infused the organization with the two basic principles he subscribed to throughout his life. First, from his favorite scripture, Micah 6:8—"And what the Lord requires of you: Only to do justice, and to love kindness, and to walk humbly with your God." Second, his personal definition of character—"…to go on and do what you know you should do even after the mood and motivation have left you."

John had PKD as did his father, Boone Gammill. Lee and his brother, Randy, also have the disease.

"There was no dialysis and no transplants in those days," shared Lee. "Both my grandfather and my father passed from complications from PKD."

The Gammills have taken a leadership role in advancing the search for treatments and a cure and continue to have a transformational impact on the PKD Foundation. Lee and his wife, Susan, are members of the PKD Foundation's Lifetime Giving Society, as are the late John Gammill and his wife, Dee.

The family also funded an endowed chair, the John Gammill Professor in Polycystic Kidney Disease at the Oklahoma University Health Sciences Center. Fellow 2015 Gratitude Honoree, Ben Cowley, M.D., holds this chair position.

The Gammill family's support dates back to the organization's founding when Lee's father, John, responded to an ad in a national insurance magazine seeking individuals to join the founding board of what was then known as the Polycystic Kidney Research Foundation. Lee's stepmother, Dee, served on the Foundation's Board of Trustees after her husband's term ended.

In addition to supporting the Foundation financially, John also takes part in advocacy efforts and keeps up with advances in PKD science and research. He says one of his most memorable moments was visiting with Congressional leaders in Washington, D.C., to support the Genetic Information Non-discrimination Act (GINA).

"It was in 2001 or 2002, and I went with a group of delegates from the PKD Foundation to support the GINA legislation," he said. "You know, it's very difficult to get the ear of a Congressman.

"Sometimes you can get a moment with their office personnel, or an aide, but to speak directly with them is a challenge. I kept on pushing until I was confident I got a few things passed onto Congress during that visit.

"I feel good about that."

Lee says his father was passionate about PKD research and hoped that treatments would be found in time for Lee and his brother, Randy.

"Treatments weren't found in time to help my dad, and I don't think they'll be found in time to do anything for me," he shared. "But I hope they'll be found in time for my children."

He said he's glad to be honored at the Gratitude Benefit.

"I'm happy to participate in a fundraiser that supports the search for treatments for PKD," he said. "The next few years will be decisive for the Foundation and I'll be interested in the direction things go."

KidneyTexas, Inc. Honored for Generous Support and Partnership

Jolie Humphrey and Karen SettleJolie Humphrey (left) with her
luncheon chair, Karen Settle

Energetic volunteers have 15-year history of raising funds to support kidney disease research

Jolie Humphrey has no history of kidney disease in her family, yet she is at the helm of KidneyTexas, Inc. as their 2014 president. She says she was inspired by the passion of the members who all share a drive to raise funds toward kidney disease research.

"My good friend Patty Jo Turner asked me to host a KidneyTexas, Inc. patron party at my home about eight years ago," Humphrey said. "I said yes, of course, and after that, I fell in love with this group of women who devote so much time and energy to the cause."

Since 1999, the dedicated volunteers of KidneyTexas, Inc. have worked in tandem with their underwriters to raise $2.5 million to improve the ability to diagnose and manage kidney disease. They have generously supported the PKD Foundation on several occasions.

"My friends ask me why I am involved in this group with no history of kidney disease within my family," she continued. "My answer: 'What's not to love?'"

"I get to work with thoughtful and talented women who all have the same goal of helping those suffering from kidney disease and to find treatments and a cure. I am excited about being this year's president!"

Founding member, Barbara Bingham, says she initially joined KidneyTexas, Inc. for many of the same reasons. But after spending time with those affected by kidney disease—especially children—her commitment has deepened.

"I became passionate about our mission to end the disease after going to a kidney camp and spending time with the children who have to live with kidney disease every day," shared Barbara.

"I stood and talked with a young girl who was probably around 12 years old for a long time while she was undergoing dialysis. Watching her touched my soul."

"That day had a deep impact on me and I don't want anyone, especially children, to have to depend on dialysis. That's why I've been involved for such a long time."

The members of KidneyTexas, Inc. all agree it's very special for them to be recognized by the PKD Foundation for their work.

"Since becoming president, I have learned more about kidney disease—how serious it is and how silent it is," Humphrey shared. "We need to change that."

"I personally am very honored that KidneyTexas, Inc. will be recognized by the PKD Foundation for our fundraising and awareness efforts."

Fundraisers

Jill & Andy LeBlanc of New Orleans and Houston

LeBlanc Family "Overwhelmed" by Support of Walk for PKD TeamsLeBlanc Family

Proud parents of Molly, Andy and Jill LeBlanc say the Walks for PKD give family and friends a meaningful way to get involved in PKD advocacy

Jill had heard of PKD in nursing school, but nothing could have prepared her or her husband, Andy, for the news. Their daughter was diagnosed with ARPKD in utero and in Jill's words, "their whole world changed."

A couple months after moving to Houston, the LeBlancs participated in their first Walk for PKD.

"The PKD Foundation gives us hope in the midst of a very stressful situation," Jill shared. "We had 50 or 60 people on our team for that first Walk and raised $8,000."

"It was really, really exciting."

Molly, who will be two years old this December, has walked in several Walks with her mom and dad. She's inspired friends of the family across the country to get involved in the fight to end PKD.

"On our first Walk we had people in from as far away as Louisiana and Washington, D.C.," Jill said. "I did traveling nursing and lived lots of different places so we have friends all over the place."

"The Walks allow us to reconnect with networks we've built across the country and our friends and family are so grateful to have a meaningful way to get involved."

Friends of the LeBlanc family not only travel to participate in the Houston Walk for PKD, they form their own teams in their respective cities.

"Andy's aunt had a team in the Tidewater Walk for PKD," said Jill. "And our friends and family even had Walk teams in National Capitol, New Orleans and Philadelphia."

On top of getting their loved ones involved in supporting PKD research, advocacy and awareness, the Walks also give the LeBlancs the chance to meet other families who have children with ARPKD. Jill and Andy have found comfort in the knowledge they're not alone.

"It's good to speak with other parents and hear real examples of how differently ARPKD can present itself in each child," shared Jill. "It's reassuring and helpful to know we're doing all we can for Molly."

Jill and Andy say being honored for their fundraising efforts at the upcoming Gratitude Benefit is "overwhelming." At the end of the day, this is a family that sees the silver lining in the cloud.

"This whole process is difficult as it is," Andy said. "But we have reconnected with people from all different points in our lives who want to help, thanks to social media and email."

"We're seeing faces and hearing voices we haven't seen in decades. It's amazing what Molly has done for us."

Physician

Benjamin D. Cowley, Jr., M.D., of Oklahoma City

Dr. Ben Cowley Grateful to be Honored by PKD FoundationDr. Ben Cowley

Longtime PKD researcher credits patients and families for the vitality of the PKD Foundation and its commitment to finding treatments

Early in his career, Ben D. Cowley, Jr., M.D., trained with Jared Grantham, M.D., one of the Co-founders of the PKD Foundation. His ties to PKD research are obvious, but Dr. Cowley says there's another important reason he's spent almost 30 years involved in PKD research.

"I have a lot of patients who live with PKD," he said. "As a clinician, it's frustrating not to have targeted treatments."

"The opportunity to develop therapies is appealing."

Dr. Cowley is Vice Chair of the PKD Foundation's Board of Trustees and past Chair of the Scientific Advisory Committee. He currently serves as the Chief of Nephrology and Hypertension and John Gammill Professor in Polycystic Kidney Disease at the Oklahoma University Health Sciences Center.

Like many other researchers working to understand the mechanisms responsible for PKD development and progression, Dr. Cowley is optimistic about the advancements made over the last several years.

"I anticipate that we'll see effective therapies for PKD in my career," shared Dr. Cowley. "Over the past 30 years there has been a significant increase in the understanding of how the disease progresses."

But he also stresses that "the first therapies developed to treat PKD will likely not be the last."

"When initial therapies are developed, we can't hang up our spurs and say we've done everything we can," he explained. "We saw this with sulfa drugs and penicillin. Ultimately, better antibiotics were developed."

"I think therapy for PKD will be something that evolves as we continue to understand more about PKD and how it manifests over time."

Helping others understand PKD is another of Dr. Cowley's passions. He takes time to speak to patients and families as well as other physicians about the disease.

"I'm glad to contribute when I'm asked," he said. "My goal is to explain things to patients in a way that makes sense to them."

"Patients and families are hungry for information. The Foundation understands that and provides opportunities to increase awareness and understanding for physicians and those who have PKD."

Dr. Cowley says he's humbled and grateful to have his efforts recognized by the Foundation. He also emphasized the critical role patients and families play in the Foundation's mission to advance research and understanding of PKD.

"I have always been incredibly impressed by the engagement and knowledge of the Foundation's supporters," he shared. "The PKD Foundation fundraises from those that are directly affected by this disease, and they are to be congratulated and thanked for their generosity and commitment that – to a major extent – are responsible for the tremendous advancements we now have in understanding polycystic kidney disease."

Volunteers

Carolyn Morris of Southlake, Texas

"I Feel It Must Happen …"Carolyn Morris

Carolyn Morris married PKD

"Enjoy every day of your life together' is what the doctor said after my husband was diagnosed with PKD at 25 years old," shared Carolyn Morris. "They told us he wouldn't live beyond 40 and that was the only advice they had for us."

"It turned out to be some of the best advice I ever got."

He defied doctor's expectations and fought a courageous battle with the disease until his until his death at age 47. Research into his genetic heritage revealed PKD in every generation of his family.

"We had our only child, my daughter, when my husband was diagnosed with PKD," Carolyn continued. "She was diagnosed with PKD when she was a senior in high school."

At that time, Carolyn didn't know about the PKD Foundation, but many years later she discovered the North Texas Chapter and began volunteering.

"We were a small core group that wanted to help bring awareness of PKD and raise funds for research," she explained. "I was a former school principal so I knew a little bit about walks. Norm Sereboff had attended a walk for another charity around that time and we decided to hold a Walk for PKD."

Carolyn called the Chapter's first Walk in 2002 "a learning experience." In 2004, Carolyn relocated the Walk to Southlake, Texas, where it has raised nearly $1 million for PKD research in 10 years. In November 2013, Carolyn organized the first Cocktails for a Cure held in Dallas to raise additional funds that supported research. Last year, the North Texas Chapter was 4th in the nation for fundraising.

Today, Carolyn is the Co-coordinator for the North Texas Chapter, as well as the Walk Co-coordinator. She said, "The PKD Foundation is the only organization in the U.S. solely focused on research for a treatment or a cure for PKD.

"I feel it must happen."

Her daughter received a transplant from a living donor in 2006. She requires a daily regimen of anti-rejection drugs and remains healthy since her transplant. Her son, Carolyn's grandson, is one of the main reasons Carolyn is so devoted to raising money for the PKD Foundation.

"We were riding in the car one day and he told me he didn't want his mom to die of PKD," shared Carolyn. "Then he looked up at me and said I don't want to die of PKD."

"It was like a knife plunged into my heart," she continued. "I told him I would do everything I possibly could to raise research money to find treatments and a cure for PKD."

Carolyn takes every PKD story to heart. She's listened to sisters who have lost brothers, sons who've received kidneys from fathers and daughters who care for mothers on dialysis. And she's also cried along with young parents who've lost a baby to ARPKD.

Carolyn serves as a City Council member in Southlake, Texas. But finding a cure for PKD is one of her passions.

She is very appreciative to have her efforts recognized by the Foundation. "Research takes money and PKD research is incredibly under-funded. I'm always trying to bring awareness to that need and it's a tremendous honor to receive this recognition by the PKD Foundation at the 2015 Gratitude Benefit."

Patti Ruffin of San Antonio

Volunteering to Fight PKD is "Best Paycheck Ever"Patti Ruffin

Patti Ruffin's tireless work to fight PKD is fueled by her family's struggles and hope for a treatment for future generations

"Seeing my family members suffer so extensively has given me the passion to carry on the legacy that they couldn't because they ran out of time," said Patti. "I can't control the fact that I have PKD, but I can control how I live with PKD."

For many years, she has dedicated much of her time as a volunteer with the San Antonio Chapter. While living in Dallas, she began working with the PKD Foundation in 1988 as a Co-coordinator with the "Texas Friends" of the PKD Foundation. Unfortunately, Patti was sidelined with medical problems as a result of her disease in 1993. She returned to help when the Chapter began hosting the San Antonio Walk for PKD in 2004 when she was on hemodialysis.

"After receiving my transplant in 2005, I accelerated my volunteer time with the San Antonio Walk for PKD," she continued. "I took full retirement in 2009 and decided to step up and assume the San Antonio Walk for PKD Coordinator role that year."

Patti says the people in San Antonio have opened their hearts—and their checkbooks—to help fight PKD, and she is grateful for the chance to raise awareness with the medical and lay communities in the area.

Her lifetime of experience as a medical administrative assistant and patient advocate in the medical university setting empowers her with a solid foundation from which to advocate for increased research, funding and support for PKD.

"I've been fortunate to have access to extensive knowledge—and excellent medical care—as a result of my career path," she explained.

"When I heard about the PKD Foundation's efforts to make a difference through better medications for high blood pressure, kidney infections and pain control, and their other important work, I knew I wanted to be part of it.

"I do this for my grandmother, two uncles, my father and my dear sister who lost their battle too young," she said. "I'm paving a better future for my younger sister and her two children who live with PKD on a daily basis.

"I've been blessed with a new lease on life—why not share it with others," she said. "When people ask me why I volunteer, I have three words: best paycheck ever. I am very honored to be chosen for this recognition from the PKD Foundation."

Lifetime Achievement

Norm Sereboff of Dallas (a posthumous award)

Sue Sereboff Remembers Her Husband's Fighting SpiritNorm Sereboff

Norm Sereboff to be honored at the 2015 Gratitude Benefit for his tireless work to raise awareness of PKD and inspire hope in others

When Norm Sereboff passed in 2013, he left behind a legacy of determination, compassion and tenacity. He never gave in and always went that extra mile for others.

His wife, Sue, recalls how he made it his personal mission to encourage others diagnosed with PKD at every opportunity. She says it was what he most enjoyed about his work with the PKD Foundation's North Texas Chapter.

"Once, a young mother, who found out she had PKD during her pregnancy, found Norm's name and contacted him," Sue shared. "She was so distraught and didn't know what to do."

"She was about a 45-minute drive away and Norm got right in the car and went over there. By the time he left her, she had a new outlook and renewed hope for the road ahead."

Sue said Norm would use his own life as an example. "He would say, 'I'm still here. I'm enjoying a good quality of life and so can you.'"

"Norm considered all the extra years after his transplant a gift and he wanted to give back," she continued. "He always had such a positive attitude; he just kept plugging along."

Norm was a 28-year transplant survivor. He served on the PKD Foundation's Board of Trustees from 2004 to 2006 and served as Chapter Coordinator for the North Texas Chapter from 2005 until his passing in 2013. He also served on the Foundation's Volunteer Advisory Committee.

Sue also points out that Norm was a passionate advocate for his own health, and he influenced the care and treatment his physicians administered to their other PKD patients. She said he took excellent care of himself and this allowed them to enjoy their life together to the fullest.

"Nine months before he died, we took a trip to China," Sue continued.

"Norm always had such a great attitude. Before we went on that trip, he said to me, 'I can't do everything, but I can still do a lot.'"

Sue said Norm would have appreciated being honored by the PKD Foundation.

"It's a great idea and a good fundraiser—which Norm would have loved," she explained. "I'm sure he would have been proud to be part of an event that would help raise awareness for PKD."

She said Norm will be remembered for his "fighting spirit" and for "being such an incredible inspiration for his children."

2014 Gratitude Honorees

Corporate Philanthropist

Select Equity Group Foundation

Abby SchumerCorporate Philanthropist

Select Equity Group Foundation

Abby Schumer's employer, Select Equity Group, L.P., knew her father had PKD and lost his battle to the disease in 2009, just a few days after Abby's wedding. Since she began working at the company in 2005, she'd shared his story when she "pitched" the PKD Foundation as a possible charity for the Select Equity Group Foundation to fund.

Over the years, Select Equity has graciously contributed more than $390,000 to the Foundation's mission to end PKD. But it wasn't until just a few years ago that her co-workers learned Abby has PKD, too.

"It felt good to share my own story," she says. "I'm so privileged to work at a firm with such a special, tight-knit culture. The response was overwhelmingly positive. I felt compelled to share my experience since so many others cannot."

Abby's father was a corporate litigator and kept his PKD a secret his entire life. He advised her to do the same. But she feels now is a particularly powerful time to be more vocal about PKD, and the PKD Foundation's work to fight it.

"PKD is so mysterious compared to other diseases like cystic fibrosis and muscular dystrophy," she says. "We need to find ways to bring more attention to PKD and get more funding for research."

She believes current advances in research make this a pivotal moment for organizations and potential funders to get involved."We've seen some incredible breakthroughs in the last 20 years," Abby says. "I think now would be a great time for new funders to get involved and be able to say they were part of this turning point — and increased momentum — in research and discovery."

Abby says she's very excited Select Equity Group Foundation is being honored by the PKD Foundation for its generosity, and she's hopeful that her story will end differently than her family members who had PKD.

She concludes, "The battle is far from over, but for the first time there's real hope that patients like me have a real chance to fight this disease that has ravaged our families for generations."

Fundraisers

The Kringstein Family

Kringstein FamilyFundraisers

The Kringstein Family

Andrea Kringstein says PKD is "rampant in her family." Her father lost his battle with PKD at 58, and her grandmother passed from PKD as well. Andrea's family has supported the PKD Foundation for nearly 30 years. Her recent search for a kidney transplant donor prompted her to get more involved with the PKD Foundation and the Walk for PKD.

"I have a potential donor — I know I'm one of the lucky ones," she says. "But I look down the road for my daughter and worry. Hopefully, my son, who tested negative for PKD, will be her kidney donor one day."

Andrea and her family — Richard, Jamie and Jason — led Team Kringstein in the 2013 New York City Walk for PKD. Usually very reserved about her medical issues and private life, Andrea and her children took to Facebook to raise money for the Walk … and search for a compatible kidney donor.

"Team Kringstein had about 40 members, but a lot of participation beyond that from family and friends who donated," says Andrea. "My children set up a Facebook page called 'My Mom Needs a Kidney' and we received 18,000 likes in the first week!

"We posted about the Walk in social media and sent out letters to many of our friends to raise money."

Andrea and her family are being honored for their incredible fundraising work through the Walk for PKD and Run for PKD programs. Their efforts are an inspiration to other families affected by PKD.

"The PKD Foundation is the main charity my family is involved in," she continues. "I want to prevent my kids and future generations from having to live with the full effects of PKD, and the Foundation is working toward finding treatments and a cure."

The Kringstein family has been touched by the generosity of family and friends that have stepped forward to help them raise money for the PKD Foundation.

"PKD significantly affects my family, but there are millions of people with this disease," Andrea explains. "It thrills me to be able to participate and make a difference. When I do something, I like to give 100 percent. The Walk is a great way to get people involved and raise awareness."

"I realize people are asked to give money to a lot of different organizations, so I make a point to let them know how personal PKD is to me and what it means to my family when I'm fundraising.

"It's really quite moving to see what people will do for you, if you reach out to them."

Physician

Ron Perrone, M.D.

Ron Perrone, M.D.Physician

Ron Perrone, M.D.

Dr. Perrone has a wide-ranging interest — and experience in — translating basic scientific discoveries into clinical medicine. His early work focused on epithelial transport and then segued into work with immortalized epithelia, including human intrahepatic biliary epithelium, human polycystic liver cysts and the human bladder.

His current field of specialty is PKD, with an emphasis on the role of total kidney volume (TKV) as a biomarker in response to clinical therapies.

"It's difficult to study early onset of PKD because even while the kidneys are growing, they can still be functioning normally," explains Dr. Perrone. "The work being done with the PKD Outcomes Consortium (PKDOC) is geared toward validating TKV as an early biomarker in the progression of autosomal dominant PKD (ADPKD)."

Dr. Perrone has been a member of the Scientific Advisory Committee (SAC) for the PKD Foundation since 1999 (Chairman from 2006-10). He frequently lectures at national and local patient meetings. Dr. Perrone also served as the Tufts Medical Center site Principal Investigator for the HALT PKD and TEMPO 3/4 studies of PKD.

His current work with PKDOC is instrumental in improving outcomes in future PKD research.

"For the past four years I've been involved in bringing together contributors from academia, the pharmaceutical industry, National Institutes of Health (NIH), U.S. Food and Drug Administration, Clinical Data Interchange Standards Consortium (CDISC), and Critical Path Institute (C-Path)," he says. "Working together, we continue to lay the groundwork for TKV as a legitimate clinical trial and regulatory endpoint in ADPKD."

When asked how he feels about being honored for his contributions to the study of PKD by the Foundation, Dr. Perrone is quick to emphasize the partnerships that are advancing PKD research.

"I'm very pleased to be recognized, but there are many others who have made, and continue to make, important contributions."

Volunteers

Heidi Grossman Cambareri

Michele Karl

Robin Rothman

Heidi Grossman CambareriVolunteers

Heidi Grossman Cambareri

Heidi Grossman Cambareri is the fourth generation in her family affected by PKD. She says her diagnosis of PKD at age 18 following a kidney infection didn't come as a big surprise.

"I was upset, but I wasn't devastated," she explains. "My father was living with PKD at the time, and his kidney function was beginning to decline.

"He inherited PKD from his mother. It was passed to her from her father, who died at 48 from kidney failure. My uncle, now deceased, also had PKD. My aunt has PKD and is on dialysis."

After a second kidney infection landed her in the hospital at 25 years old, Heidi felt she had to do something. Her desire to take action led her to the PKD Foundation.

"In spring of 2004, just around the time my second child was born, I became coordinator of the then dormant Hudson Valley Chapter," Heidi shares. "I also started up a local Walk for PKD and coordinated both the Walk and the Chapter for five years.

"Attending National Conventions, holding meetings, and working knee-deep in the Foundation gave me a great sense of empowerment and helped me feel some control over my health."

Heidi is a participant in the TEMPO 3/4 and TEMPO 4/4 trials for tolvaptan. She is currently the Hudson Valley Chapter Education Coordinator. Previously, she worked closely with Foundation leadership to share her story in a national messaging campaign.

Heidi says the one of the biggest challenges PKD posed for her was family planning. "Deciding whether or not to even have children — and how many — was very much affected by PKD," she says. "I have never regretted the life I've lived. I'm very happy to be here, so I decided to start a family."

Heidi encourages people with PKD to get involved in the Foundation to help them connect with others having the same experience and to access information.

"It's empowering and a fantastic way to take charge of your health and make sure you're doing everything you can to stay well," she says. "Don't give in to the belief that there is nothing you can do about PKD. Be proactive!"

Heidi feels the PKD Foundation is "fighting for us every day."

"They have made great strides," she says. "Without the PKD Foundation, we really would have no hope. I hope that my children will never have to worry about PKD."

Karl FamilyVolunteers

Michele Karl

Michele Karl heads up the PKD Parents Chapter with her co-coordinator, Julia Roberts. She was also one of the leading advocates for the first PKD/CHF & Other Cystic Diseases Conference held last spring in New York City. The PKD Foundation is recognizing her for her tireless commitment to being both a voice and a support system for families coping with infants and children with PKD.

A member of the Hudson Valley Chapter, Michele is a mother of three sons, Max, 13; Nate, 10; and Gabriel, 7. Max and Gabe both have autosomal recessive PKD (ARPKD). The boys were diagnosed in 2006 when Gabe was born at just 34 weeks. Although he didn't have any symptoms at the time, Max subsequently tested positive for ARPKD.

"I deal with PKD every day," says Michele. "It circles everything I do — it's always there."

After their sons' diagnoses, Michele and her husband went online looking for support. That's where they met Julia Roberts. Shortly after, they attended the PKD National Convention and began their involvement with the Hudson Valley Chapter.

"We became more engaged with the Foundation as months went by," Michele explains. "Our family began participating in the Walk for PKD and attended more National Conventions."

In 2008, Michele went through Coordinator training and became Co-coordinator of the PKD Parents Chapter with Roberts, a position she still holds.

"The best part is meeting other parents going through the same thing and being able to offer support — and get support from others going through the same things we are.

"I'm very involved with families by email and through Facebook," she says. "I advise parents to learn as much as they can because ARPKD is such a rare disease. Many doctors don't know much about it and you have to be an advocate for your own child."

Michele says not knowing what the future holds or having a direct course of action is difficult, but being involved with the PKD Foundation provides hope.

"I'm very honored to be recognized at the Gratitude Benefit," says Michele. "Being involved in the Foundation makes me feel like I'm doing something to help my kids and other families looking for support.

"The PKD Foundation is helping us make a difference for our kids."

Robin RothmanVolunteers

Robin Rothman

Robin Rothman has been a passionate PKD Foundation volunteer for nearly 25 years. The friends she's made have become her family.

"All the friends, doctors, researchers, fundraisers, staff and volunteers are my family," Robin explains. "We've all been in this fight for a long time. PKD is with you for life, unless we cure it."

She remembers being at the National Convention in Washington, D.C. to learn about new developments in research. It was 1990 and she had just become a volunteer. When she suggested that the Foundation send a group of PKD delegates to petition Congressional representatives for funding, her cohorts voted her in as Coordinator of the New York City Chapter. "I wasn't expecting to do that, but I took on the job with love and passion," she says. "I tried to help others like me and my family."

Both Robin's father and grandmother succumbed to complications from PKD. She feels her activism is a powerful way to honor their memories and also leave a legacy for her son to be proud of.

In her tenure as a PKD volunteer, Robin has served as Coordinator of the New York City Chapter for 12 years, served on the PKD Friends Advisory Committee and chaired several very successful fundraisers.

"In 1996, I held the first formal fundraising event in New York City for PKD," she says. "We attracted lots of press coverage and raised enough to fund our first research grant!

"We repeated the same event the next year with even more success," she continues. "In 2004, the New York City Chapter held our fundraiser at the Bryant Park Grill and had one of the most successful auctions ever."

She's also testified before the National Institutes of Health (NIH), the Senate Appropriations Committee and the United Network of Organ Sharing (UNOS).

"I honed my lobbying skills through my involvement with other organizations and brought everything I'd learned to the PKD Foundation," says Robin. "I relished the opportunity to have our cause heard and supported on the Hill. "I did everything in my power to make our case a compelling one."

In addition, Robin has been a vociferous advocate for patients and their participation in the medical studies needed to combat PKD.

Through it all, Robin keeps coming back to the importance of the relationships she's built during her time as a volunteer.

"The real deal of all this is the people," she emphasizes. "It's seeing your friend, your rock and supporter, in need of a transplant and walking the halls of the hospital with him until he can walk on his own. It's beating back the fear and replacing it with hope," she says. "It's not always easy and it's not always possible, but it's always worth trying for."