2015 Gratitude Honorees
KidneyTexas, Inc. of Dallas
The Gammill Family of Marble Falls, Texas, and Oklahoma City
KidneyTexas, Inc. Honored for Generous Support and Partnership
Jolie 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."
Jill & Andy LeBlanc of New Orleans and Houston
LeBlanc Family "Overwhelmed" by Support of Walk for PKD Teams
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."
Benjamin D. Cowley, Jr., M.D., of Oklahoma City
Dr. Ben Cowley Grateful to be Honored by PKD Foundation
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."
Carolyn Morris of Southlake, Texas
"I Feel It Must Happen …"
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'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."
Norm Sereboff of Dallas (a posthumous award)
Sue Sereboff Remembers Her Husband's Fighting Spirit
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."