PKD Life - Summer 2023 - 3

THOUGHTS FROM SUSAN
A Family Affair
Better awareness will help us improve
the lives of everyone affected by PKD.
I n the five months since I joined the PKD Foundation
as president and CEO, I've had the wonderful
opportunity to meet many of you in our PKD
community. There's one thing that truly stands out
to me: the profound impact that PKD can have on
families. And not just for those who've been diagnosed,
but for other family members who are keenly aware
of what PKD might one day mean for them.
Elevating awareness about PKD-both within
families and among the healthcare community-is a
top priority for the PKD Foundation. We're addressing
it in several ways. One key initiative is our
ADPKD Registry, the first national patient-centered
registry for people with autosomal dominant polycystic
kidney disease (ADPKD). The information
captured in the Registry enables patients to take
the future of PKD into their own hands by sharing
their expertise on the disease experience, providing
researchers valuable information to help guide
future research initiatives.
This month, we're launching an updated version
of the Registry to make it even more valuable to
patients and researchers. This includes tools that
LIFE
PKD FOUNDATION
CHIEF EXECUTIVE OFFICER
Susan Bushnell
CHIEF OPERATING OFFICER
Carmen Gleason, MHRM
CHIEF GROWTH OFFICER
Craig Robertson
CHIEF RESEARCH OFFICER
Matt Becka DNP, RN, MBA
BOARD CHAIR
Rob Roth, MBA
BOARD VICE-CHAIR
Navin Manglani, MBA
TREASURER
Stu Caplan
SECRETARY
Amy Omenn
SCIENTIFIC ADVISORY
PANEL CHAIR
Michal Mrug, MD
ISSUE CONTRIBUTORS
Moain Abu Dabrh, M.B.; Dani Buckner; Margaret Butler; Daniel
Cukor, Ph.D.; Stephanie Donahue; Mohammad El-Ghanem, M.D.;
Vanessa Holliday; Elise Hoover, MPH; Christopher Kwoh, M.D.;
Nadiya Lakhani, R.D.N.; Ronak Lakhia, M.D.; Lauren Malone;
Catherine Martin; Gillian Mayersohn, Psy.D.; Zubin J. Modi, M.D.;
Zelle Morefield, R.D.; Olufunke Ojuri; Javier A. Pagan, M.D.; Vishal
Patel, M.D.; Christian Philipsen; Catherine M. Sjostedt; Lorin Valk
EXECUTIVE EDITOR
Sydney Johnston; SydneyJ@pkdcure.org
CONTRIBUTING STAFF
Elise Hoover, MPH; Nicole Harr; Shanna Eiklenborg, MBA
EDITORIAL, DESIGN &
PRODUCTION MANAGEMENT
MANAGING EDITOR
Donna Behen, donna.behen@manifest.com
ASSOCIATE CREATIVE DIRECTOR
Tami Rodgers
SENIOR PHOTO EDITOR
Leah Rudolfo
VP, PRINT PRODUCTION
Laura Marlowe
PRODUCTION TECHNOLOGY
SPECIALIST
Marilyn Bain
patients can use in their doctor appointments. You
can read more about the additions on Page 20. If
you're not already participating in the Registry, I
encourage you to consider signing up. It's a powerful
way to share your own experiences while helping the
entire PKD community.
Our cover story (Page 13) features Catherine Martin,
Lauren Malone, and the beautiful little boy who's
made their sisterly bond even more cherished. Their
heartwarming story perfectly exemplifies the multigenerational
impact of PKD. It's another incredible
reminder of our community's strength and why our
vision to end PKD is vital.
We're always interested in hearing your thoughts
about what you've read in these pages or what you'd
like to see covered in future issues. Please feel free to
send us an email at pkdlife@pkdcure.org.
Susan Bushnell
President and CEO, PKD Foundation
This material is provided for your general information only. You should not use the information in this magazine as medical advice, but should always consult your physician or local treatment center before pursuing or deciding to forgo any course of treatment.
PKD Life is published biannually by the PKD Foundation (PKDF), 1001 E. 101st Terrace, Suite 220, Kansas City, MO 64131. 800.753.2873, toll free 800.PKD.CURE. The opinions expressed are those of the authors alone and do not represent the opinions, policies, or
position of the PKD Foundation, the Board of Trustees, the Scientific Advisory Committee, or editorial staff.
Acceptance of advertising for products and services in PKD Life in no way constitutes endorsements by the PKD Foundation.
©
2023 Polycystic Kidney Disease Foundation.
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PKD Life - Summer 2023

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