PKD Progress - Fall 2014 by Mark Solis

Fall 2014

Progress PKD

A magazine to inform and educate PKD patients and families, Foundation supporters, health professionals and researchers.

BABS AND JAY ROSENFELD SET AN EXAMPLE AS FOUNDATION PARTNERS

PARTNERING FOR TREATMENTS THROUGH PKD CLINICAL STUDIES

NEW KIDNEY ALLOCATION SYSTEM IN EFFECT IN DECEMBER 2014

PKD CONNECTION BLOG LAUNCHED

10 Years Later, and the Smiles are Even Bigger

Photo recreation shows transplant families together again, and all grown up page 9

Letter from the Board of Trustees’ Treasurer PKD and the PKD Foundation is personal to me just as it is personal to you. My story begins with my grandfather, Joseph Bruening. He co-founded the PKD Foundation in 1982 along with Dr. Jared Grantham. Why? Because PKD became personal to him. My grandmother was the first in her family to be diagnosed with PKD. Later, my mother was also diagnosed. When my grandfather learned that nobody in the country was doing anything specifically to tackle PKD, he was outraged. He set out to do something about it. He found Dr. Grantham in his own backyard through a newspaper article in The Kansas City Star, and they teamed up to create the only organization solely focused on PKD. As a teenager, I remember my grandfather’s office where he was constantly writing letters to people to raise awareness, get information and raise money for the Foundation. I was very close to my grandfather. He always had a gentle, quiet smile. The exception was when PKD came up. He remained fiercely determined that more had to be done. It was a personal foe for him. Now, 32 years later, I am participating in my grandfather’s legacy by serving on the Foundation’s Board of Trustees. I began my service in 2009 and have been privileged to serve as the treasurer for the past two years. The board takes seriously the trust you have placed in us to be good financial stewards of the Foundation’s resources. We don’t often talk about the infrastructure of the Foundation, but a solid infrastructure ensures the accountability and future of the Foundation. We regularly review our strategic plan to ensure it stays focused on the needs of the PKD community. The recent audit for fiscal year 2013-14 found we spend 77 cents of every dollar on research, education, advocacy, support and awareness (based on a three-year average). That is a fantastic number and we are proud of it. Another way we ensure accountability is by employing a CPA as our Chief Financial Officer (CFO). Ray Smith has served as our CFO for nine years. Ray was recently selected as CFO of the Year for small nonprofits by the Kansas City Business Journal. The Foundation wouldn’t be here today if my grandfather and Dr. Grantham hadn’t come together. They were the original ‘PKD partners.’ Like them, my role is to partner

Blaise (right) pictured with her parents, Orme Lewis, Jr. and the late Elizabeth Bruening Lewis

with other board members to build the Foundation. We all contribute something different to make this a stronger organization. Every board member has friends and family members affected by PKD, and several are PKD patients. Just like you, they are dedicated to helping find treatments and a cure for PKD. We count on many partners to get our work done, and you are one of them. Throughout this issue are stories about many partnerships that make a difference for PKD. I am thankful for you and all the Foundation’s supporters. We have a truly amazing team that is focused on ending PKD. I hope you are as proud of it as I am. Thank you for all you do to help further the Foundation’s mission. Together, we will continue my grandfather’s legacy.

Blaise Hazelwood

PKD Foundation Board Member/Treasurer and Financial Oversight Committe Chair

Read the Foundation’s annual report at pkdcure.org/annualreport to learn more about our recent accomplishments. (available Nov. 11)

Babs and Jay Rosenfeld Set an Example as Foundation Partners Babs Rosenfeld has PKD and a long family history with the disease. “I grew up knowing that both my grandmother and father had the disease and saw how it affected all of our lives,” Babs said. “Eventually, my father was lucky enough to have a transplant.” Babs was tested at a young age as her mother hoped to show none of her children had it, but unfortunately Babs did have PKD. In turn, Babs and her husband, Jay, decided to have their children tested when they were young. Their son tested “probable” at the time and confirmed positive as an adult. He has been under a doctor’s supervision for the last few years. Their daughter showed no signs of the disease when she was young or when she had genetic testing while pregnant 11 years ago. However, in the past year, even though asymptomatic, she too has been diagnosed with PKD. She has two children of her own, and Babs and Jay worry about the future generations of their family. “Becoming a Foundation Partner is important for several reasons, most critically, the research made possible by our most committed, generous donors,” said Jackie D. Hancock, Jr., PKD Foundation CEO. “In addition to putting these gifts to work advancing PKD research, our donors’ generosity allows the PKD Foundation to provide education and support to help patients and their families cope, as well as fund grassroots advocacy and awareness. As a member of one of our three giving societies, you are a Foundation Partner and through your vision, you are an inspiration to

others. Thank you to our generous supporters, like the Rosenfelds, that make the PKD Foundation a priority in their philanthropic giving.” Foundation Partners receive exclusive updates from the CEO and invitations to conference calls and webinars with Foundation leadership and PKD experts. Jay and Babs often participate in Foundation Partners’ conference calls and webinars to learn about developments. “We were able to listen to the advance session about the tolvaptan trials and decision, information about transplants and a session on total kidney volume.” n

Babs and Jay Rosenfeld, Houston, are members of the Founders’ Annual Giving Society.

Foundation Partners are made up of members of these giving societies: •

Members of the Founders’ Annual Giving Society are donors who contribute at least $1,000 throughout the course of a year.

•

The Lifetime Giving Society represents the Foundation’s leading philanthropists. These individuals, corporations and foundations have made significant investments of at least $100,000 to the Foundation over time.

•

The PKD Legacy Society members have chosen to make an investment in continuing the work of the PKD Foundation through their will or other estate plans, creating a lasting legacy in the fight to end PKD.

For more information, visit pkdcure.org/foundation-partners or contact Michelle Davis-Wingate, Chief Development Officer, at michelled@pkdcure.org or 816.268.8477.

Partnering for Treatments Through PKD Clinical Studies Awareness and Education In order to find treatments, and ultimately a cure, patient participation in clinical studies is critical. One of the biggest hurdles for successful studies is awareness. Approximately 80 percent of all clinical trials fail to recruit enough volunteers within planned timelines. Under-enrollment is potentially one of the most significant problems facing PKD drug development. To address this, the PKD Foundation partners with medical centers, pharmaceutical companies and other organizations to make people aware of studies they are conducting. Accelerating Clinical Trials (ACT) Alert emails sent by the Foundation inform people about studies that are actively recruiting in their area. This

is part of the Foundation’s Clinical Trials Awareness Program (CTAP). Painting a clear understanding about expectations of participants and a study’s impact helps increase enrollment. The PKD Foundation recently produced several education videos that describe types of studies, their purpose, what participants can expect and the benefits of participation. They feature testimonials by patients who participated in studies, and researchers, physicians and study coordinators who have conducted them. Special thanks to Otsuka America Pharmaceutical, Inc., who provided an educational grant to produce these videos. View the videos at pkdcure.org/clinicalstudies.

Clinical Trial on Use of Statins for Children Shows Success A study conducted by the University of Colorado School of Medicine researchers showed that pravastatin, a medicine widely used for treatment of high cholesterol, also slows the growth of kidney cysts in children and young adults with ADPKD. This study suggests that Melissa Cadnapaphornchai, M.D. intervention in childhood may have the greatest long term effect on the progression of PKD. “Based on our findings, we strongly recommend consideration of pravastatin use in ADPKD children and young adults unless there is a medical reason against taking a statin as determined by the patient’s doctor,” said co-principal investigator Melissa Cadnapaphornchai, M.D. “This is very exciting news as this is the first medication shown Note: The study was published in the Clinical Journal of American Society of Nephrology, Volume 9, Number 5, May 2014. Researchers emphasize that pravastatin is not FDAapproved, therefore, it is essential that patients discuss the potential risks and benefits of treatment, including possible psychosocial and financial implications with their doctor. Treatment of study participants with pravastatin was associated with no significant side effects (though should not be used during pregnancy). There is not currently a parallel study in adults.

to help control kidney disease in ADPKD children.” Dr. Cadnapaphornchai speaks about the importance of early intervention in the clinical studies video. The three-year study was conducted with 92 children/young adults Read MaryKatherine’s story at ages 8 to 22 years with pkdcure.org/voicesofpkd. ADPKD. Each participant was randomly selected to receive pravastatin or a placebo. Study participant MaryKatherine Michiels-Kibler reflected that “Playing a small role in the first positive finding for children with PKD truly made me feel like I was a part of something bigger, something that will benefit generations to come.”

Visit pkdcure.org/clinical studies to: • Sign up for ACT alerts about new studies in your area • Watch videos about participating in clinical studies • Learn about active studies and how to get connected

Clinical studies are conducted by teams that include: Participant: A person who has been diagnosed with PKD and wants to learn more about their disease, while helping researchers move closer to treatments for future generations. Food and Drug Administration (FDA): The FDA oversees and approves drugs. The information from all the people in a trial is presented to show how the drug candidate is effective. This is why it is critical that patients who start studies complete them. The FDA’s mission is to ensure drugs benefit people while not doing any harm.

Nephrologist or urologist: Often, you will learn about open studies from your primary provider. They will receive all the information and results from your study so they can take even better care of you.

Principal investigator: The PI, who is often a physician, oversees the study and monitors your health to determine the study’s safety and effectiveness.

Researchers: They play an important part by studying samples and information. You may not see them but they are behind the scenes doing important work to provide data that will be submitted to the FDA.

Study coordinator: The coordinator will meet with you and tell you exactly what to expect. They will explain risks and potential benefits (called informed consent) before you decide to participate. Once you enroll, your coordinator will be with you throughout the study, and follow-up after it’s over.

SAFETY FIRST! The most important factor in a study is the participant’s safety. One of the first steps in getting involved in a study is the informed consent process. The study coordinator will meet with you to provide all the details about what to expect; explain risks and potential benefits; and answer questions. Through this process, a decision will be made about whether the study is the right fit for you or not. You might decide not to participate, or the coordinator may determine that you don’t fit qualifications. If you qualify and choose to participate, you will sign an informed consent document. It’s better to decide not to start a study, than start it and realize it’s not for you. Completing the study is critical for researchers to have full and comprehensive data to determine conclusions. However, participation is

completely voluntary and even if you do start the study, you can stop participating at any time and for any reason. If you do decide to stop, it’s best for your health and the outcome of the study to talk with your coordinator and have a final visit. During the study, the study team follows standards and precautions to ensure the safety of participants. The study team follows a plan called a protocol, to ensure that all procedures are conducted correctly and safely. The coordinator and study team are there to address your questions or concerns at any time during the study. It’s in everyone’s best interest for you to be as informed as possible! n

Partner with Your Representative to Advocate for Kidney Health Some of our most influential partners are those who represent kidney-related health initiatives in the government. Contacting members of Congress is a critical part of the efforts to secure funding for PKD research, and ultimately, discovering treatments and a cure for PKD. Members of Congress look to their constituents to bring important information to their attention. As someone with PKD, or a loved one or parent, you know more about PKD than others. You can have an impact by raising awareness for PKD and discussing our legislative priorities for the year with members of Congress. Here is how you can make a difference: n Sign up for Advocacy Alerts from the PKD Foundation Go to pkdcure.org/advocacy-alerts to receive the latest on the PKD Foundation advocacy platform. n Be an advocate virtually You can advocate for PKD patients from your own computer or smartphone. Find tools and resources at pkdcure.org/advocate to share your voice with your elected officials. You can also learn if your member of Congress is supportive of kidney and transplantrelated issues by viewing the Issues Directory (search by state at pkdcure.org/advocate). n Attend an event in Washington, D.C. For the second year, PKD Foundation staff and patients will be attending two events in Washington, D.C. hosted by organizations the PKD Foundation collaborates with. • Feb. 23-27: Rare Disease Week is hosted by the Rare Disease Legislative Advocates. Legislative Conference and Congressional meetings are Feb. 24 and 25.

• March 2-3: The 2nd Annual Kidney Patient Summit is hosted by the National Kidney Foundation. If you are interested in attending, sign up for Advocacy Alerts from the PKD Foundation at pkdcure.org/advocacy-alerts. n

Ask your representative to join the Kidney Caucus and Rare Disease Caucus The bipartisan Congressional Kidney Caucus was founded in March 2002. Their purpose is to educate Congress and the public about the problem kidney disease poses for our society, and about the federal government’s singular role in providing access to life-sustaining treatment for those Americans with the severest form of stage five chronic kidney disease (CKD). Established in 2009, the bipartisan Rare Disease Congressional Caucus works to bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and create opportunities to address roadblocks in access to and development of crucial treatments. To see if your member of Congress is already a member of one of these Caucuses, visit the Issues Directory on pkdcure.org/advocate. n

Collaboration is Key to Advancing Research Partnership with KHI Aims to Improve Health Care for Patients with Kidney Disease

The Foundation was a major sponsor of the FASEB Science Research Conference on PKD this past summer, which brought the world’s PKD experts together. Picture courtesy of Foto Pastrengo/FASEB

FASEB Meeting Brings World’s PKD Experts Together As part of the PKD Foundation’s Accelerating Treatments to Patients program, we fund PKD-related scientific meetings that bring experts together and provide continuing education for health professionals. The Foundation was a major sponsor of the Federation of American Societies for Experimental Biology (FASEB) Science Research Conference on Polycystic Kidney Disease: From Molecular Mechanism to Therapy, held in Italy last August. The international conference welcomed prominent scientists working in areas experiencing rapid scientific advances and conducting cuttingedge research. It was also an opportunity for young investigators and new fellows to attend and hear from more seasoned researchers. PKD Foundation Scientific Advisory Committee (SAC) member since

1999, Ron Perrone, M.D., attended, along with SAC Chair Terry Watnick, M.D., and key researchers and clinicians connected to the Foundation. “Meetings like this do move the needle forward,” said Dr. Perrone. “At the meeting, you have the world’s PKD experts in one room interacting intensely. We are discussing the latest advances in discovery research, therapy development and clinical trials. There is a lot of opportunity for networking and collaboration, and new research projects start as a result.” This is the fifth time FASEB has had a meeting focused on PKD since 2002. FASEB is the nation’s largest coalition of biomedical researchers, representing 27 scientific societies and more than 120,000 researchers internationally. FASEB is recognized as the policy voice of biological and biomedical researchers. n

Up to 26 million Americans have kidney disease and more than 570,000 Americans suffer from kidney failure. To help the nephrology community collaborate to improve Harold Saul is the PKD Foundation’s patient safety and develop new therapies, patient representative for KHI. the Kidney Health Initiative (KHI) was established. KHI is a collaboration between the American Society of Nephrology (ASN), the U.S. Food and Drug Administration (FDA) and numerous member organizations, including the PKD Foundation. “This is a revolutionary organization, with a government agency partnering with the largest group of nephrologists in the country,” PKD Foundation CEO Jackie D. Hancock, Jr. said. “We are proud to be a part of this effort.” KHI also involves patient representatives, with Harold Saul representing the PKD Foundation. Harold was previously a member of the Foundation’s Board of Trustees and Chapter Co-coordinator for Tampa. He was on dialysis before receiving a kidney transplant in June 2012. His father and brother also received kidney transplants after being on dialysis. “I am happy to be involved because it gives patients an opportunity to present their point of view,” Harold said. “The researchers and clinicians were open to my input on what is realistic for patients.” n

New Kidney Allocation System (KAS) in Effect in December 2014 The new KAS aims to enhance the longterm benefit of kidney transplantation in order to: • give people longer function with their transplanted kidney • make better use of available kidneys • increase transplant opportunities for hard-tomatch candidates (based on blood type or immune sensitivity).

early 100,000 people are currently listed for kidney transplantation nationwide. About 10 percent of kidney candidates die each year while waiting. Currently, deceased donor kidneys are allocated to potential recipients based primarily upon the time the potential recipient has been waiting and the tissue match between the donor and potential recipient, which can lead to a large gap between the longevity of the donor kidney and recipient. Because there are not enough kidneys donated to meet the need, it is important to match the right recipients with the right kidney, ensure as many kidneys as possible are transplanted and that these transplants have the best possible outcome. In response to this, a new Kidney Allocation System (KAS) from the United Network for Organ Sharing (UNOS)/Organ Procurement and Transplantation Network (OPTN) is taking effect Dec. 4, 2014. The current kidney donor quality metric (standard criteria donors or

SCD, and expanded criteria donors or ECD) is being replaced with the Kidney Donor Profile Index (KDPI), which is a percentile score associated with how long the kidney is likely to function compared to other kidneys. For example, a KDPI score of 20 means that the kidney is likely to function longer than 80 percent of other available kidneys. Factors that go into the KDPI include age, weight, creatinine and health history, among others. Each kidney candidate will have an Estimated Post-Transplant Survival (EPTS) score calculated, a percentile score based on how long the candidate is expected to live compared to other candidates on the waitlist. For example, a person with an EPTS score of 60 means they will likely live longer after transplant than 40 percent of people on the list. EPTS is calculated based on age, length of time on dialysis, any prior transplant and diabetes status. The 20 percent of kidneys that are expected to last the longest (with a KDPI score of 20 or less) will be offered first to patients likely to need a transplant the longest (with an EPTS score of 20 or less). How Will this Affect the PKD Community? Prior to the decision, UNOS issued a call for comments and the PKD Foundation submitted a statement. The comment included that while the amendments are beneficial to younger patients with ARPKD, they may negatively impact patients who need transplants later in life.

“The anticipated shift in the highest quality organs away from older recipients may adversely affect ADPKD patients disproportionately.” Clifford Miles, M.D., a regional representative on OPTN’s Kidney Transplant Committee and a transplant nephrologist at the University of Nebraska Medical Center, recognizes this is controversial. “Age is only one of the factors in the EPTS score,” Dr. Miles said. “If you are in your 50s or 60s, and are not diabetic or on dialysis, you can actually get into the top 20 percent of EPTS scores. My recommendation for the PKD community is to be referred to the transplant list early and ideally before starting dialysis.” n

Next Steps

Dr. Miles encourages the PKD community to speak with their medical team to find out how the changes affect them and follow their instructions and recommendations for care. For more information about the KAS, visit pkdcure.org/kidneyallocation for resources.

10 Years Later, and the Smiles are Even Bigger Fowler Family Celebrates 10-Year Transplant Anniversary

evin Fowler celebrated his 10-year transplant anniversary in August. His 16-year-old daughter Kelley wanted to do something to celebrate the occasion, so she sent a letter to 200 family members and friends asking them each for a $10 donation. The Fowler family was overwhelmed by the response. As of printing, Kelley’s efforts raised $6,500. In addition to donations for the PKD Foundation, they received cards and notes of well wishes, which Kelley has compiled into a book for her dad and his kidney donor, Chris Bodendieck.

2014

2004

Kevin and his wife Kathy were touched and proud of Kelley’s work. “It was the best gift I could have gotten,” Kevin said. “My dad is lucky,” Kelley said. “I wanted to give back and raise money for the PKD Foundation to help other families impacted by PKD who aren’t as lucky. I was really excited to see that many people give after following our family’s transplant journey.”

In the above photo: The Bodendieck and Fowler families recreated a photo taken ten years ago. Back row from left to right: (Bodendiecks) Dylan, Heather, Loren, Adam, Zach, (Fowlers) Kathy and Kelley. Front row: (Bodendiecks) Blake, Christopher, Chris, (Fowlers) Kevin and Jack

The Fowlers are longtime supporters of the PKD Foundation, helping start the St. Louis Walk for PKD in the early 2000s. In 2013, Kevin’s aunt Laverne Duvall left a bequest of nearly $1.7 million to the PKD Foundation, the largest estate gift the Foundation has ever received.

Kelley advises others who are looking to contribute to the PKD Foundation to take the first step. “Find something you are passionate about and do it,” she said. “Do something that may seem small, but it can snowball into something bigger and into so much love.”

To create your own DIY for PKD: Fundraise Your Way event, contact Sara Brown, Fundraising Events Manager, at sarab@pkdcure.org or 816.268.8469. n

“My dad is lucky,” Kelley said. “I wanted to give back and raise money for the PKD Foundation to help other families impacted by PKD who aren’t as lucky. I was really excited to see that many people give after following our family’s transplant journey.” 9

Sue Sereboff Remembers Her Husband’s Fighting Spirit

hen Norm Sereboff passed away in 2013, he left behind a legacy of determination, compassion and tenacity. Norm will be honored on Feb. 28 at Gratitude: A Celebratory Benefit for the PKD Foundation in Dallas. 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 national Volunteer Advisory Committee. 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.” “Norm considered all the extra years after his transplant a gift and he wanted to give back. He always had such a positive attitude.” Sue also points out that Norm was a passionate advocate for his own health, and he influenced the

TEAM TERESA HONORS LOST COUSIN AND FRIEND WITH RUN FOR PKD Denise Martin’s cousin, Teresa, died when she was just 45 years old from multi-organ failure. Teresa learned she had PKD at age 20, and was waiting on a kidney transplant from her mother, Janet, when she ended up in the hospital and found out she also needed a heart transplant. An ER nurse for more than 20 years at Cedars-Sinai Medical Center in Los Angeles, Team Teresa at the San Francisco Rock ‘n’ Roll Half Marathon: (left to right: Shari Coskey, Chris- Teresa had the best medical care ty Queirolo, Denise Martin, Janet Schmitt (center/ in her corner for her fight. front), Pam Green (back with visor), Lisa Bradley. After growing up together and remaining close, Denise hopped on a plane to visit Teresa in the hospital and give her a pep talk. However, when she landed, it was time to say good-bye instead. Teresa passed away just nine days after being told she needed the heart transplant. “I couldn’t believe she was gone.” Denise said. “I thought I would sit by her bedside and read her silly magazines to cheer her up, but instead I had to say good-bye. Teresa was my cousin, but I felt like I lost my sister.” When Denise arrived back home in San Francisco, she wanted to do something. A friend with PKD told her about the PKD Foundation, so she went online and found out about the Run for PKD and the San Francisco

care and treatment his physicians administered to their other PKD patients. He took excellent care of himself and this allowed them to enjoy their life together to the fullest. She said Norm will be remembered for his “fighting spirit” and for “being such an incredible inspiration for his children.” To read about event details and other Honorees being recognized at the 2015 Gratitude Benefit in Dallas on Feb. 28, visit pkdcure.org/gratitude. n Rock ‘n’ Roll Half Marathon. Denise was not a runner, but wanted to raise money and awareness for the disease that took her cousin. She posted on Facebook about the Run for PKD program, and in a matter of days, five of her friends agreed to join her. Together, they raised nearly $5,000 for the PKD Foundation. “The Run for PKD is a great outlet,” Denise said. “I would train every day with a playlist of Teresa’s favorite songs. I would run and think of her. I did this for Teresa and for her legacy. It was the hardest and most rewarding thing I have ever done.” n

Interested in running for PKD? There is something for everyone including 5Ks, half marathons and marathons. Learn more at runforpkd.org or contact Sara Brown, Fundraising Events Manager, at sarab@pkdcure.org or 816.268.8469.

PKD Foundation Blog Features Favorites and New Connections The recently launched PKD Connection blog (pkdconnection.org) is an online community for you to: • Get inspired • Learn how to be pro-active with your health (or a loved one’s) • Gain a deeper understanding about PKD and the Foundation’s work • Get to know others facing similar challenges • Know you’re not alone The blog combines new features with long-time favorites: PKD Will Not Beat Me by Valen Keefer is for readers seeking encouragement about positive living and proactive health management. Valen inspires and empowers through stories about her personal journey with PKD, including a kidney transplant. PKD Health Notes by Renal Dietitian Kelly Welsh provides health, nutrition and well-being information to those with PKD and other kidney related issues. You’ll find practical, day-to-day living tips, information and recipes.

The PKD Connection blog will also include posts by: • Researchers about developments and the research process • Doctors and health professionals about living with PKD • People in the PKD community about their experiences with PKD • Staff about the Foundation’s services and programs • Board of Trustees about the Foundation’s work and vision The goal of the PKD Connection blog is to educate, inform and inspire in a deep and meaningful way. Go to pkdconnection.org and get connected! n

Board of Trustees (2014-2015 term) Frank C. Condella, Jr. (Chair) Benjamin D. Cowley, Jr., M.D. (Vice Chair) Blaise Hazelwood (Treasurer) Jerome T. Lienhard, II (Secretary) Sen. Robert Bennett Paul T. Conway Lisa Guay-Woodford, M.D. Michele Karl Klee Kleber Brock Nelson Richard R. Nelson

Benjamin D. Cowley, Jr., M.D. Iain Drummond, Ph.D. Michal Mrug, M.D. York Pei, M.D. Ronald Perrone, M.D. Richard Sandford, Ph.D., FRCP Darren Wallace, Ph.D. Angela Wandinger-Ness, Ph.D.

Dwight Odland Julia Roberts Jeffrey Rona Anne Ryan Fran Towey Terry Watnick, M.D. Hilary Wolfe Scientific Advisory Committee Terry Watnick, M.D. (Chair) Stefan Somlo, M.D. (Vice Chair) John Bissler, M.D. Alessandra Boletta, Ph.D.

Leadership Team Jackie D. Hancock, Jr., Chief Executive Officer Angela Connelly, Chief Marketing Officer

Michelle Davis-Wingate, Chief Development Officer Ray Smith, CPA, Chief Financial Officer pkdcure.org pkdcure@pkdcure.org 816.931.2600 1.800.PKD.CURE FAX 816.931.8655

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8330 Ward Parkway, Suite 510 Kansas City, Missouri 64114

Please send your contact information updates or notify us of duplicate mailings of this publication by contacting donate@pkdcure.org or 1.800.PKD.CURE (753.2873), ext. 187.

The mission of the PKD Foundation is to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for polycystic kidney disease and improve the lives of all it affects.

Eating Well During the Holiday Season While most people simply worry about extra weight gain during the holiday season, others have to ask the question, “What can I do to keep my kidney healthy?” Here are some kidney friendly tips for making it through this meat-centric, sodium-rich, calorie-laden holiday season. • Stay hydrated • Make meat a side dish and let vegetables be primetime • Spend more time in the kitchen to oversee food preparation • Be choosy about the sweets • Have fun and enjoy Visit pkdconnection.org for a complete article and recipes from Jacob. And, look for his posts on the PKD Connection blog. Jacob Taylor, MS, RD, LD, is a clinical dietitian at Children’s Mercy Hospital and Ph.D. candidate at the University of Kansas Medical Center.