PKD Life - Winter 2020 - 3

THOUGHTS FROM ANDY

From Care to Cure
Our new magazine is there for
you, every step of the way.

to the first issue of PKD Life
W elcome
magazine. At the PKD Foundation,

Share your
thoughts
on social
media using
#PKDLife

improving the quality of life for all patients
with polycystic kidney disease is central to our
mission. And that's why we've created this new
quarterly magazine, which is all about helping
patients with PKD and their caregivers navigate day-to-day living with the disease.
Whether you have PKD, you're the parent of a
child with PKD, or you're a caregiver, this magazine is for you. Our hope is that the information
you find in these pages will help you to better
manage the disease in yourself or your loved one,
take a more active role in healthcare decisions,
and be fully informed about all available options.
PKD Life provides information and advice
from patients, caregivers, doctors, and other
medical experts, but we're not here to tell you
what decisions to make. Our intent is to create
a dialogue that can help you and your loved
ones make those decisions for yourselves.

Andy Betts
President and CEO, PKD Foundation

PKD

LIFE

In this first issue, we cover one of the most
difficult decisions that parents with PKD face-
whether to have their children tested for the
disease. You'll learn how two families navigated
that decision (see page 18). You'll also read
about the PKD Foundation's ADPKD Registry,
the first patient-centered nationwide registry
dedicated to and self-reported by people with
ADPKD (see page 16).
There's much more information in this issue,
and planning for our spring issue is well underway. We'd love to hear your thoughts about
what you've read in these pages and the topics
you'd like to see covered in future issues. Feel
free to email us at pkdlife@pkdcure.org.

PKD FOUNDATION

CHIEF EXECUTIVE OFFICER
Andy Betts
CHIEF OPERATING OFFICER
Amanda Hanova, M.S.M.
CHIEF RESEARCH OFFICER
Chris Rusconi, Ph.D.
CHIEF ADVANCEMENT OFFICER
Stephanie Sullens

BOARD CHAIR
Beverly Benson, Ph.D.
BOARD VICE-CHAIR
Klee Kleber, M.B.A.
TREASURER
Rob Roth, M.B.A.
SECRETARY
Paula Krumboltz Hutchinson
SCIENTIFIC ADVISORY
COMMITTEE CHAIR
Michal Mrug, M.D.

ISSUE CONTRIBUTORS
Irina Barash, M.D.; David Baron, Ph.D.;
Bill Brazell; Megan Buck; Parker Burns;
Angela Cusimano, M.S., R.D.; Katherine Dell, M.D.;
Judy Ehrlich; Rachel Full; Georgina Habermann;
Kelly Hartog; Erum Hartung, M.D.; Linda Herman;
Elise Hoover, M.P.H.; Michele Karl; Mark Kaufman;
Michal Mrug, M.D.; Vishal Patel, M.D.;
Ronald Perrone, M.D.; Frederic Rahbari Oskoui, M.D.;
Mike Roney; Claire Walsh, M.S., R.D.;
Karyn Waxman; Kate Williams
EXECUTIVE EDITOR
Lauren Winchester, M.A.O.L.; laurenw@pkdcure.org
CONTRIBUTING STAFF
David Baron, Ph.D.; Elise Hoover, M.P.H.; Nicole Harr

EDITORIAL, DESIGN &
PRODUCTION MANAGEMENT
MANAGING EDITOR
Donna Behen, donna.behen@manifest.com
ASSOCIATE CREATIVE DIRECTOR
Tami Rodgers
SENIOR ART DIRECTOR
Andrea Heser
VP, PRINT PRODUCTION
Laura Marlowe
PRODUCTION TECHNOLOGY SPECIALIST
Marilyn Bain
IMAGING SPECIALIST
Cary Bower

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 quarterly 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. 2020 Polycystic Kidney Disease Foundation.

P K D C U R E .O R G

http://www.PKDCURE.ORG

PKD Life - Winter 2020

Table of Contents for the Digital Edition of PKD Life - Winter 2020