rogress SPECIAL EDITION WALK FOR PKD 2014 PKD Summer 2014 VIRTUAL WALK OPENS UP NEW POSSIBILITIES TEAM UP TO FIGHT PKD

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1 Summer 2014 rogress PKD A magazine for PKD patients and families, Foundation supporters, health professionals and researchers VIRTUAL WALK OPENS UP NEW POSSIBILITIES TEAM UP TO FIGHT PKD SPONSOR CULTIVATION: THE KEY TO A SUCCESSFUL WALK KIDS MAKE THEIR MARK WITH PENNY KIDS DASH WALK FOR PKD 2014 SPECIAL EDITION

2 Letter from the Chief Development Officer Dear Friend of the PKD Foundation: As Chief Development Officer, I m fortunate to oversee our Chapter Services team, which leads the Walk for PKD, our biggest fundraising and public awareness event. What a great year 2014 is shaping up to be for the Walk for PKD! This spring, four cities brought back Walks that hadn t been held for several years and, collectively, they surpassed their goal by almost 20 percent raising nearly $65,000. The National Capital Walk for PKD raised the most, bringing in $30,432; New Orleans came in second raising $22,677. One special story stands out. After participating in the Houston Walk last fall and raising $8,405 with a team of 60 people, Team Molly Mae took part this spring in the National Capital and New Orleans Walks. In National Capital, 16 team members raised $1,030 and in New Orleans 80 team members raised $10,485. What a special family rallying around this sweet little girl in all parts of the country. I love the Walk for PKD for several reasons. First, it is an incredible community-building event. There is nothing better than coming out on Walk day and seeing teams of family, friends and colleagues rallying around one another. What a wonderful place to meet others that understand exactly what you are going through. Plus, it s always fun to see all of the great t-shirts the teams create! Second, the Walk for PKD is a great way to raise awareness about PKD, especially when you partner with local businesses to support the Walk. I m happy to share that sponsorship for the 2014 Walk season is off to a strong start. To date, local sponsors have committed $86,000, nearly two-thirds of what was raised in local sponsorship revenue for the entire 2013 Walk season. If you know of a business that would make a great sponsor, get the details on how to recruit them on page 7. We gratefully acknowledge the support of Otsuka America Pharmaceutical, Inc. as the underwriting sponsor of the 2014 Walk for PKD Finally, the money you donate and fundraise for the Walk for PKD generates nearly one-third of the Foundation s annual revenue. The more the Walks grow, the more that can be done to end PKD. As you are well aware, there is currently no treatment to slow or stop the growth of the kidney cysts that plague generations of families suffering from PKD. What you may The Davis-Wingate family at the St. Louis Walk for PKD. not know is that fifty percent of PKD patients kidneys fail by age 50. The only remedies for PKD patients once their kidneys fail are dialysis and transplantation. While these options are life-saving, having a treatment that preserves healthy kidney function is the best option. Research is how we ll find treatments to stop or slow the growth of the cysts and keep their kidneys from failing. It costs $350 to fund one day of a research grant. As you consider what gift you ll make to the Walk and begin to ask others to give, remember that the dollars you raise helps fund this research. In this special issue of Progress you ll read about teams and individuals who are committed to helping end PKD through participating in Walks. Please read these special stories, and write your own by building a team or getting involved in a way that s special to you. We ll see you at the start line! Michelle Davis-Wingate Chief Development Officer PKD Foundation P.S. Included in this special Walk for PKD edition of PKD Progress magazine is a donation envelope. Any gift you make using this envelope will go directly to the Walk for PKD. Please designate on your envelope if you re supporting your local Walk or the Virtual Walk, a particular team or participant. Thank you! 2

3 Virtual Walk a Way to Fight Back for Renee WALK ANYTIME, ANYWHERE. The Virtual Walk for PKD opens up new possibilities. Renee Greeley refuses to let PKD beat her. The Virtual Walk for PKD gives her the power to fight back in a way that she couldn t otherwise do. It can be difficult to spread the word, being sick so much, but I do what I can, when I can, she says. I will not let this disease take even one extra bit of my life that it doesn t already have. Renee explains her relationship this way: PKD is Godzilla. My family is Tokyo. Her grandmother, mother and two of her brothers all lost their battles with PKD at young ages. Renee began experiencing kidney failure in her early 40s. the cost, the uncertainty and the lack of awareness. Renee says the PKD Foundation gives her hope that there may one day be a cure, and that s why she participates in the Virtual Walk for PKD. I completely support the Virtual Walk, says Renee. I set up a team last year, and did very well. It s the best way to spread awareness. She distributed information about PKD at the Virtual Walk she held and talked to people about living kidney donation. Renee feels that not enough people know about PKD, and it s the responsibility of families affected by PKD to help demystify the disease. Renee Greeley (right) poses with her superheros, her grandson Landon, daughter Amanda, daughter Caitlin and brother Kevin. Kidney failure, for me, happened slowly, then all at once, says Renee. I began dialysis in 2012, but there didn t seem to be a way to stop that long slide into renal failure. I immediately looked into getting on a transplant list and searching the web for information. As a patient, I had to actively search for information I didn t know I needed. The PKD Foundation was my best resource, and I thank my lucky stars it exists. Renee received a transplant in June She has two daughters, Amanda and Caitlin. Amanda doesn t have PKD, but Caitlin does. It is difficult to say what the biggest challenge is in dealing with PKD, shares Renee. There is the pain, discomfort and treatment. There is I hope to do my Virtual Walk annually for the rest of my life, she says. PKD research has come a long way from my grandmother s time and even my adolescence, but there is so much more to do. Never give up, fight on for a cure and speak out. How Does the Virtual Walk for PKD Work? The Virtual Walk for PKD gives you the opportunity to participate in the largest PKD Foundation fundraising event of the year, even if there isn t a Walk in your area. Being a part of the Virtual Walk allows you the flexibility to walk anytime, anywhere and with anyone you want! Pick a day that works for you. Grab family and friends and hit a local park or even a treadmill at the gym. Register your team today and join the fight to end PKD. There are fundraising tools available at walkforpkd.org or contact us at walkforpkd@pkdcure.org or PKD.CURE ( ), ext 5. 3

4 2013 Walk for PKD Season TOTAL $ RAISED $1,903,856 WALK VOLUNTEERS 1,672 18,388 DONORS # of walkers MORE THAN 11,000 S SENT THROUGH PERSONAL AND TEAM WALK PAGES 19,844 4

5 Team Up to Fight PKD! The importance of Walk teams to the Walk for PKD is undeniable. Last year, nearly 900 teams were responsible for more than 75 percent of the money raised from the Walks. That s more than $1.4 million! Your Competition in 2014: The Top Five Walk Teams of The Goodmans Chicago 2. Friends of Marie QJ Atlanta 3. Bost Bunch Pittsburgh 4. Team Kringstein New York 5. Ivan s Investors for PKD Cure Tampa Bay The Renal Avengers team looks forward to the Kansas City Walk for PKD each year. Hear their story at walkforpkd.org/why-i-walk. This amount is even more significant when you consider the Walks themselves account for nearly one-third of the PKD Foundation s total annual operating budget. But there s a lot more to the Walk for PKD than money raised and miles covered. Teams are the lifeblood of the Walk for PKD. They help create the special feeling of community, fellowship and camaraderie on Walk day. Robin Maser, Ph.D., Assistant Professor, Department of Clinical Laboratory Science, and Team Captain of The Renal Avengers from the Kidney Institute at the University of Kansas Medical Center, looks forward to the Kansas City Walk for PKD every year. The Renal Avengers were the number one fundraising team in Kansas City in 2013, raising $8,526. It s a great event, Robin says. The volunteers are great, cheering you on as you re walking. We love the chance to connect with patients and friends. The Renal Avengers formed when the Kidney Institute combined two teams that used to compete against each other the CystBusters and the Exorcysts. The Kidney Institute has strong ties to the PKD Foundation. Jared Grantham, M.D., co-founded the PKD Foundation in 1982, and is currently FACP Distinguished Professor, Emeritus at the Institute. Alan Yu, M.D. (B.Chir.), Professor, Director, Division of Nephrology and Hypertension and the Kidney Institute, University of Kansas Medical Center, has been involved in the Walks since he joined KU three years ago. Continued next page 5

6 Team Up to Fight PKD! continued It s a time of great excitement in PKD research, Dr. Yu explains. I truly believe discoveries will begin increasing exponentially within the next few years. This adds a new energy for The Renal Avengers, and I hope the Walk in general. In addition to being the most successful team involved in the Kansas City Walk, the Kidney Institute also hosts an Ask the Scientist booth onsite during the Walk. We really enjoy it when PKD patients and their friends and family stop by to ask questions, explains Robin. It s a family event, so there are always lots of children running around, in addition to all of the other fun events taking place at the Walk. It s a fun day. Whether or not you want to shoot for the number one fundraising spot like The Renal Avengers, forming a team and joining a Walk in your area couldn t be easier. You only need three more people to qualify as a team. You can find complete details at walkforpkd.org. Walk teams give you the chance to involve your friends and family in a cause close to your heart: putting an end to PKD. They re also a great way to make new friends and connect with other PKD patients and families. The first step to ending PKD is easy - form your Walk for PKD team today. TEAMBUILDING TIPS FROM THE RENAL AVENGERS Have a party to register team members. Treats and food draw a crowd. Invite your network with an or social media post. Send encouraging s to your team in the weeks before the Walk. Host a post-walk celebration to share photos and build excitement for the next year. You can find more helpful tips and resources in the Walk Toolbox at walkforpkd.org. Watch videos, including one from The Renal Avengers, about why they walk at walkforpkd.org/ why-i-walk. 6

7 Sponsor Cultivation: The Key to a Successful Walk The PKD Foundation is the largest private funder of PKD research and the only organization solely dedicated to supporting PKD patients and their families. The Walk for PKD is responsible for nearly one-third of the PKD Foundation s annual operating budget a budget that funds groundbreaking research, as well as provides education and support, advocacy and awareness. Sponsor and exhibitor support of local Walks account for nearly 7% of Walk revenue, making their support a key part of a local Walk for PKD s success. Walkers can help local Walk Coordinators ensure sponsors return year after year, and bring in new sponsors to grow the Foundation s base of support, which generates more awareness of PKD. Identify New Sponsors and Exhibitors Many companies are looking for charitable causes to support and want to partner with organizations that are making a difference in their area. Identify: Businesses that you and your family frequent: restaurants, stores, museums and other local attractions. Business owners tend to be responsive to requests from their loyal customers. Your health care providers. From your nephrologist s office or your transplant physician to dialysis clinics, local hospitals and transplant centers. Invite those that treat PKD patients to be a part of this inspiring day. Your employer. Businesses often have budgets to support causes important to their employees. Don t miss this opportunity to engage their support! Make an Introduction Once you ve identified a potential sponsor, work with your local Walk Coordinator to ask for their sponsorship. Don t know your local Walk Coordinator? You can find them online at walkforpkd.org. Select the Walk in your area and you ll find their name and . You might make a preliminary phone call or send an to the potential sponsor letting them know the Walk Coordinator will be in touch. Or you might go with the Walk Coordinator to visit the business owner. You can share your PKD story, and the Walk Coordinator can cover all of the details about what s included in the various levels of sponsorship. Or you might just give the Walk Coordinator a lead. Any of these can work. What s most important is that the business is asked! Visit with Sponsors and Exhibitors at the Walk Make sure you stop by the booths of Walk sponsors and exhibitors on Walk day. Thank them for their support and share why you Walk. We want these corporate supporters to feel a part of the event and connect to our patients and their families so they ll return each year. Invite them to walk with your friends and family. Follow Up Sponsors need to know their generosity has an impact. They should feel important and appreciated. A sponsor who feels their participation makes a critical difference is likely to offer more support in coming years. Send a personal thank you card or work with the local Walk Coordinator to present their business with a special certificate that they can display in their workplace. Don t forget to go ahead and ask them to come back next year. Having a solid base of returning sponsors, along with active recruitment of new supporters, generates much needed awareness of PKD. If you have a connection that you think would make a good regional or national sponsor, contact Michelle Davis, Chief Development Officer, at PKD.CURE ( ), ext. 114, or michelled@pkdcure.org. To see the sponsor and exhibitor opportunities available at your local Walk for PKD, go to walkforpkd.org and select the Walk in your area; then click the Sponsorship Information link. Top Five 2013 Walks by Sponsorship: San Antonio $19,000 Los Angeles $17,800 North Texas $17,250 Nashville $9,500 Cincinnati/Dayton $7,150 7

8 Kids Make Their Mark Get the whole family involved. Kids under 12 years old can take part in a short, fun run that supports the Walk for PKD. My kids have been involved in the Walk for PKD since they were born, says Jill Olroyd. It has taught them it s good to help others. Jill s family knows the impact of PKD well. Jill s husband has PKD and is awaiting a transplant. Her father-in-law had PKD and lost his battle with cancer in 2012 after a successful transplant in Jill s sister-in-law is two years post-transplant and doing well. Her children, Claire and Tanner, take a lot of pride in helping their family members and others with PKD by participating in the Penny Kids Dash. My kids love the Penny Kids Dash, Jill continues. Every bit of spare change they find goes into their piggy banks, and they are so proud to take all of the change to the St. Louis Walk for PKD every year. This summer they re having a lemonade stand in our neighborhood to raise money for PKD. Jill says watching her family struggle with PKD and the lack of attention PKD receives is the hardest part of dealing with the disease. Every bit of spare change they find goes into their piggy banks, and they are so proud to take all of the change to the St. Louis Walk for PKD every year. From my experience with my family, when the kidneys start to shut down and you enter end-stage renal disease, it happens very suddenly. Watching my father-in-law suffer, my sister-in-law suffer and now my husband suffer, has been very challenging. Like many PKD patients, Jill and her husband struggle to explain the effects of the disease to their children. The pain and fatigue the disease causes my husband is hard to explain to our children, she says. They re young and don t necessarily understand that daddy needs to rest and that he doesn t feel good all the time. My husband puts on a good front for them, but I know inside it s hard for him. Claire and Tanner love to participate in the Penny Kids Dash each year. The Penny Kids Dash gives Claire and Tanner a way to feel involved in the fight to end PKD and help future generations of people diagnosed with PKD. Continued next page 8

9 It s a good thing to do every year, says Claire. I like helping people with PKD, and it s fun to run. Her brother, Tanner, says, I raise money for PKD and run in the Penny Kids Dash. The money I take to the Dash will someday help people not be sick. Jill s involvement with the PKD Foundation has been a huge source of support for her since so many of her family members are affected by PKD. Once I married my husband, Doug, I got involved in the PKD Foundation to gain information and learn more about the disease, she explains. It was so nice to meet other people who were living with PKD and other spouses like myself. Unfortunately, this is a disease that isn t really talked about, so being involved in the PKD Foundation has given me the opportunity to spread awareness for PKD and also advocate for PKD patients. Being involved with the Penny Kids Dash gives Tanner and Claire a way to raise awareness among their friends, as well. They talk about the Walk with their friends and teachers at school who then ask me more about it, Jill explains. Spreading awareness at such a young age is amazing. I hope that my children never have to endure a diagnosis of PKD, but if they do, I pray that by that time the money they have helped raise will have given them treatment options or even better yet, a cure for PKD. WHEN WE SAY UNITE TO FIGHT WE MEAN EVERYONE! Since PKD is a disease that affects entire families, the Walk for PKD is a family-oriented event that unites people of all ages in the same mission: finding treatments and a cure for PKD. On Walk day, kids can participate in the Penny Kids Dash a short, fun run included as part of the day s events. Participation in the Penny Kids Dash is open to all registered children 12 years old and under. Visit walkforpkd.org/pennykidsdash for fundraising ideas to get your children started. Thank you to the Underwriting Sponsor of the 2014 Walk for PKD, Otsuka America Pharmaceutical, Inc. 9

10 Find Your 2014 Walk for PKD Location Help us make great strides on the road to ending polycystic kidney disease (PKD) at the 2014 Walk for PKD. To find a Walk near you and to register, visit walkforpkd.org. AS YOU RE PLANNING YOUR PARTICIPATION IN THE WALK THIS YEAR, HERE ARE SOME KEY POINTS TO KEEP IN MIND: 10 Check out the Walk Toolbox at walkforpkd.org to find fundraising tips, team tools and marketing materials, such as PSAs, logos, social media cover photos and a media relations toolkit. For every $100 of team fundraising, registered and attending team members will earn a Walk for PKD t-shirt. Always make the first gift on your fundraising page. It adds credibility and illustrates your commitment to meeting your fundraising goal. If there isn t a local Walk in your community, you can participate in the Virtual Walk. Get more details on page 3. It is never too early to take an active role in working to end PKD. Get your kids involved in the Penny Kids Dash this year. Read more on page 8. Walk teams raised more than 75 percent of Walk revenue in You only need three more people to join you to form a team. Invite your friends and family to be a part of the fun and this important cause.

11 Board of Trustees ( 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 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. 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. Leadership Team Jackie D. Hancock, Jr., Chief Executive Officer Angela Connelly, Chief Marketing Officer Michelle Davis-Wingate, Chief Development Officer Lorrie Rome, Interim Chief Scientific Officer Ray Smith, CPA, Chief Financial Officer pkdcure.org PKD.CURE FAX PKD National Convention Thank you to everyone who attended and supported the PKD National Convention 2014, where we welcomed nearly 300 patients, caregivers, researchers, physicians and others to Kansas City in June. To download speaker presentations, view photos and more, visit pkdcure.org/national-convention/recap. facebook.com/pkdfoundation twitter.com/pkdfoundation 11

12 8330 Ward Parkway, Suite 510 Kansas City, Missouri NONPROFIT ORG U S POSTAGE PAID BOELTE HALL, LLC Please send your contact information updates or notify us of duplicate mailings of this publication by contacting donate@pkdcure.org or PKD.CURE ( ), ext 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. Second Annual Gratitude Benefit Spring 2015 Dallas The second annual Gratitude Benefit is a celebration to kick off National Kidney Month. The Gratitude Benefit also honors those who have made a considerable impact on local PKD Chapters, as well as significantly advanced the work of the PKD Foundation through fundraising and philanthropy. In addition to raising vital funds to support the work of the Foundation, this special event provides a unique opportunity to bring together PKD supporters from the West South Central region (Texas, Oklahoma, Arkansas, Louisiana), as well as leaders from across the country to build stronger relationships and resources for fighting PKD. For sponsorship opportunities, contact Pat Smithson, Regional Development Director, at PKD.CURE ( ), ext. 131, or pats@pkdcure.org. Sponsors should reply by Dec. 1, 2014, in order to be listed on the invitation. Ticket sales begin Jan. 2, Join Honorary Chairs Brigid and Klee Kleber with Benefit Chairs Betsy and Chris Cook as we celebrate Honorees for their commitment to the PKD Foundation: Philanthropist Volunteer Fundraiser Physician Lifetime Achievement Visit pkdcure.org/gratitude to meet the 2015 Honorees.