Please Join Us to Celebrate our 2014 Honorees
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."
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."
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."
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."
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 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."