Supporters like you
Read about supporters who are giving hope and help to PKD patients and their families.
The Lienhards make giving back a family affair
After a fluke football injury in high school, Jerome Lienhard’s life changed dramatically. “I had a pyelogram in the hospital, which led to my PKD diagnosis,” Jerome explained. That’s how his mother and two brothers also discovered they had the disease. Subsequently they have all had kidney transplants over the years, and Jerome has also had a liver transplant.
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“It’s been challenging because Jerome’s kidney had been functioning well, until all of a sudden it wasn’t,” Jerome’s wife Sue shared. “We had to get up to speed very quickly about the severity of his illness. Plus, knowing that our three children may have PKD as well was an eye-opener. So, we educated ourselves by getting more involved with the PKD Foundation.”
Jerome and Sue have found specialists like Dr. Arlene Chapman and Dr. Frederic Rahbari thanks to the PKD Foundation network, and Jerome was on the PKD Foundation board for several years. “PKD research, awareness, and education is really important to us,” Jerome said. “As is giving back,” Sue continued. That’s why the Lienhards support the PKD Foundation through their donor-advised fund (DAF).
“Because we had a significant amount of appreciated stock, our advisor recommended the DAF. It helps us fulfill our charitable goals and offers us attractive tax savings at the same time,” Jerome said. “Our DAF was simple to set up, and it is satisfying to make decisions about our personal philanthropy. It’s a really good discipline just going through the process.”
Another reason the Lienhards like the DAF is they are able to include their children in the charitable decision-making process. “We use our DAF to make our gifts to the PKD Foundation and other charities that are dear to us, and we also encourage our kids to research and support organizations close to their hearts,” Sue noted. “We call our DAF the Lienhard Family Fund to give our kids a sense of ownership, since they will take over the fund one day.”
The Lienhards hope others will consider giving to the PKD Foundation in a way that suits them. “Our parents taught us to give back to our community, and the PKD Foundation has been a big part of our lives,” Jerome said.
“We hope our gifts help find a cure for PKD, as well as support disease management and advocacy for those with PKD.”
Coleen Gee uses her IRA to make a difference
Four years ago, long-time PKD Foundation donor, Coleen Gee, came across an article about being able to use funds from an IRA to support charity beginning at age 70½. Knowing she had funds in her IRA that she didn’t need, she immediately called her financial advisor to learn more. She has been donating from her IRA ever since.
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Coleen explained how easy it was for her. “I don’t have to write the checks, the bank does, and they keep track of the donations I make.” Each year the bank calculates how much her required minimum distribution (RMD) will be and she divides it among the six charities she supports annually. “But of course, I give the most to the PKD Foundation. I am so grateful to be able to help the PKD Foundation,” she said. With all three of her sons inheriting PKD from her husband, who passed away in 2006 due to kidney failure, she feels a very strong tie to the Foundation and the research she feels is so important for the generations to come.
Another reason she likes to give from her IRA is that she is able to donate far more than she could if it had to come from her income. “I live a humble life. I came to the U.S. 60 years ago, went to UC Berkeley, married, worked, and raised three sons. Now I am retired. I volunteer and do my own housekeeping and am very happy,” she shared. The IRA allows her to use her RMD for charitable purposes.
While she traditionally has given to the Foundation at the end of the year, she recently learned that she doesn’t have to wait until then to make a donation. “When you had the 1:1 match in the spring I wanted to make a donation.” She had her banker estimate what her year-end distribution would be for 2019 and then asked them to send PKD Foundation a check.
When asked why she gives, Coleen said, “I feel good about helping the community and impacting the lives of others.” She feels everyone has a responsibility to give back, through volunteering and donations.
Learn more about Charitable IRA Rollovers and please make sure to consult your tax or financial advisor to understand how this kind of gift will impact your taxes.
“Thanks to my friend Roger Baumann, I too had a successful kidney transplant — a testament to the great strides in treating end-stage renal disease, and the incredible generosity of donors. But it was not a cure for PKD, a disease that affects some 12.4 million people worldwide and 600,000 Americans.”
—Matt Bombeck, son of legacy supporter, Bill Bombeck and humorist, Erma Bombeck
Toni and Dennis Stuart are walking into the future
For Toni Stuart and her husband, Dennis, learning 10 years ago that she had autosomal dominant polycystic kidney disease (ADPKD) came as a complete shock. Her parents did not have the disease, and there was no known history of PKD in her family.
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Approximately 10% of people diagnosed with ADPKD have no family history of the disease. It develops as a spontaneous (new) mutation. Toni had a steep learning curve, and she channeled all of her efforts into investigating the disease and her options. She quickly learned that even through a spontaneous mutation, there was still a 50% chance she could have passed PKD on to each of her two sons.
It also distressed her to learn about the autosomal recessive form of the disease (ARPKD) that affects babies and children. “I could hardly stand it,” she said.
Determined to continue doing everything possible to support the PKD Foundation in its mission to end all forms of PKD, Toni took over leadership of the Las Vegas Walk event, where she and Dennis planned to relocate.
At the time, the Stuarts lived in Kingman, Arizona. It was two-and-a half hours each way between Kingman and Las Vegas. Toni is grateful that many of their Walk team members at last year’s Las Vegas Walk were friends from Kingman. “It’s nice to have that support. Where we live now, we have a big recreation center, and there are different groups,” she says. “I’m getting more involved in these other activities so I can meet more people and get more connections. I’m really motivated to grow this Walk.”
“Toni is an absolute workaholic for PKD and preparing for the Walk,” Dennis says. “She’s right on top of everything.” He pauses and then adds, “She’s in constant pain, but I don’t think anybody knows it but me. She won’t bring anyone else down because of how she feels.”
Toni was glad when the first treatment for ADPKD called tolvaptan was approved by the Food and Drug Administration in April 2018. Yet, her ultimate goal remains the same. “I understand that there are different forms of the disease, so one treatment won’t be enough,” Toni says. “One treatment won’t work for everyone, and it isn’t a cure. We want a cure.”
The Stuarts feel lucky that their sons Sean and Bret, now in their early 30s, have had recent ultrasounds with no sign of cysts. Yet, even as they experience relief that their sons appear to be free of the possibility of PKD, the couple has decided to include the PKD Foundation in their will for a percentage of their estate.
“The Foundation means hope to me,” Toni says. “They are the ones providing funds to pay for research that will get us to a cure.”
When asked if the couple shared their decision with their sons, Toni said, “We’ve told them we have a certain amount going to the PKD Foundation. They think it’s great.”
She believes with all her heart that others who are able to include the PKD Foundation in their estate plan, as she and Dennis have done, will find joy and satisfaction in being part of this great hope: a future free from PKD.
“The money is definitely going to a good cause. It’s so important for these doctors and scientists to learn more about this disease and to better understand what causes our cysts,” Toni says. “Knowledge is everything. That’s how we get to a cure.”
Bill Bombeck’s legacy gift honors his family
by Matt Bombeck
In 1989, my mom, Erma Bombeck, began to develop symptoms related to PKD: back pain, fatigue, and high blood pressure. She was told she would soon be facing dialysis. Privately, she handled her illness with strength and optimism, relying on support from her husband, Bill. She would often brush aside concerns about her illness, mostly with humor, believing that her purpose was to continue to write and make people laugh. One of her favorite quotes was from George Burns, “I can’t die, I’m booked.” But largely, she remained quiet about her struggle; PKD was not funny, and she never wanted to be the face of a disease.
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She continued to write her column and books while on dialysis and went on the waiting list for a kidney. She tried to maintain her schedule, hopeful that a donor would soon come along. Finally, in April 1996, a donor organ did become available. She was excited to get her life back.
But sadly, there were complications from the surgery, unusual even 20 years ago, and she passed away.
After her passing, my dad, Bill Bombeck, heard from thousands of fans and friends, many wanting to know more about the disease that took her life. My dad was so moved and grateful for the outpouring of support. He also became aware of the need for kidney education and donor awareness. Most did not know that she was even ill.
Throughout his life, my dad had always been involved in volunteerism and philanthropy. He was an educator at heart, and now understood the importance of kidney education and donor awareness. Although my mom was “private” about her illness, he believed that others could benefit from sharing her story about her own struggles with the disease. There was work to do.
In his own family, PKD did not end with his wife’s passing. Both his sons were diagnosed with the disease. Seven years later my brother, Andy, underwent a successful kidney transplant with his donor Shari, Andy’s wife. And six years from that, thanks to my friend, Roger Baumann, I too had a successful kidney transplant — a testament to the great strides in treating end-stage renal disease, and the incredible generosity of donors. But it was not a cure for PKD, a disease that affects some 12.4 million people worldwide and 600,000 Americans.
When my dad passed away this year in January, part of his legacy was making a gift to the PKD Foundation to raise awareness about PKD and, most importantly, to find a cure that we know affects generations of families. He was aware of the great work that the Foundation was doing on behalf of patients: finding new treatments, funding much-needed research and perhaps most importantly, reminding patients and families that they are not alone in this struggle. Please join my dad and our family in support of the PKD Foundation.
Learn more about how to create your legacy with the PKD Foundation.
“I understand that there are different forms of the disease, so one treatment won’t be enough. One treatment won’t work for everyone, and it isn’t a cure. We want a cure.”
– Toni Stuart
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