PKD Foundation Walk to End PKD: On the Journey to Fight Polycystic Kidney Disease, It’s a Family Affair

Frank Czerwiec, M.D., Ph.D.VP, Global Clinical Development

Frank Czerwiec, M.D., Ph.D. works collaboratively towards development of our Clinical Development team’s leadership in developing important new drugs, devices and other tools for the betterment of human health. As the Brand Team Co-Chair for tolvaptan, for its indications of hyponatremia and autosomal dominant polycystic kidney disease (ADPKD), Dr. Czerwiec represented Otsuka before patient-advocacy groups, the Critical-Path’s PKD Outcomes Consortium and ADPKD Summit, ASN’s Kidney Health Initiative, IQ Consortium’s Drug Induced Liver Injury group, reimbursement agencies, and as a member of several of PhRMA’s working groups.

Every year, the Polycystic Kidney Disease (PKD) Foundation holds fundraising walks across the country, where those impacted may join in a procession across town to raise funds and awareness, honor loved ones, and simply be together. This year, we both celebrate a decade of participating in PKD Foundation walks and we join all those in the wider PKD family as we look forward with a sense of commitment to continue the fight, step by step.This past weekend, colleagues participated in the NYC-area PKD walk. These colleagues now know firsthand the special feeling of fellowship that comes from being on a journey in step with some very brave and dedicated families. Two other Otsuka colleagues who also are deeply connected to the PKD community, Drs. Cibele Pinto and Shirin Sundar, have also forged this special connection in part through many years of attending PKD Foundation walks. I’d like to introduce their story:
PKD is one of the most common, life threatening genetic diseases. In the autosomal dominant form of PKD, known as ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure. Because the disease runs in families, its impact is magnified across generations as sufferers often have to watch parents, siblings and children all struggle as the disease progresses. We have spent our lives battling PKD, both as scientists and researchers at the Kidney Institute of the University of Kansas Medical Center, a world-renowned hub for PKD science, and now as MSLs for Otsuka. Around a decade ago, we started participating in the Kansas City Walk for PKD as a way to raise funds and awareness. We founded one of two UKMC walking and fundraising teams who eventually set aside their friendly rivalry and joined forces. Today, this team, the Renal Avengers, remains one of the top fundraisers in the area for the PKD Foundation. More importantly, we also got the chance for a meaningful connection with patients, family members, friends and all those who are impacted by the disease.PKD Foundation Walks account for around one-third of the organization’s budget. They are joyous, family-friendly occasions filled with camaraderie and community, where everyone involved takes time to celebrate progress and reaffirm hope for the future. Our own children have grown up attending walks; first in strollers, and eventually leading the way. We’ve spent years walking alongside colleagues who have personal connections with the disease, hearing firsthand from patients and family members who have such a personal stake in our work.  In the PKD community, we are all one big family, and this is never more evident than on a Walk.Walking alongside those who are honoring loved ones or taking action on behalf of their children always deepens our sense of commitment to our mission. Now that we both work for Otsuka, we go about our work every day with as much urgency as we did when we were scientists receiving critical research funding from the PKD Foundation. The need has never been more urgent for continued efforts to combat PKD. Events such as the regional PKD Walks are welcome reminders of the real people and families affected by this disease, many of whom have become our friends. Being active in a community with a shared goal strengthens our commitment to PKD research and promotes optimism for our work throughout the cause.
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