PKD Life - Fall 2022 - 3

THOUGHTS FROM CHRIS
Strengthening
Our Mission
Our commitment to serving all PKD patients
and families is stronger than ever.
W ith the celebration of our 40th anniversary
this year, it's an exciting time for the FounRead
more
at
pkdcure.org/
advocacy.
dation. As interim CEO and chief research officer,
I'm grateful for the opportunity to lead us through
this transition period.
This issue of PKD Life features an article about an
important topic-racial disparities in kidney care.
While PKD affects all races and ethnicities, data
suggests that Black and Hispanic populations suffer
worse outcomes because they face gaps in care
and access to necessary treatments. We know there
are significant disparities in terms of age at diagnosis,
the time to kidney failure, and access to care,
particularly kidney transplants that occur before
someone requires dialysis.
At the PKD Foundation, we are dedicated to closing
those disparities in two ways. The first is our
Peer Ambassadors Program, which is meant to
connect the PKD Foundation as a resource for those
who've historically been underserved in the PKD
community. Second, the PKD Foundation is part of
a coalition of nonprofits that is spearheading the
LIFE
PKD FOUNDATION
INTERIM CEO/CHIEF
RESEARCH OFFICER
Chris Rusconi, PhD
CHIEF OPERATING OFFICER
Carmen Gleason, MHRM
CHIEF PHILANTHROPY
OFFICER
Jon Rich
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
Patrice Adams; Siddhartha Bajracharya, M.D.; Shonale Burke;
Diane Carnevale; Neera Dahl, M.D., Ph.D.; Amanda Dill; Jennifer
Edwards-Johnson, D.O., M.P.H.; Pranav Garimella, M.D., M.P.H.;
Carmen Gleason; Alyssia Gomez; Haewook Han, Ph.D., R.D.; Kim
Holekamp; Jill Kiedaisch; Geno Leage; Michael Lioudis, M.D.;
Tatiana Mangwi; Annette Minnich; Dana Miskulin, M.D.; Funke
Ojuri; Songul Onder, M.D.; Cynthia Pan, M.D.; Iris Resto; Cayleigh
Sanders; Stephen Seliger, M.D.; Sydney Shepherd; John Sim, M.D.;
Zohreh Soltani, M.D.; Linda Vail; Terry J. Watnick, M.D.; Dwelyn
Williams, C.C.H.T., Greg Zollner, M.D.
EXECUTIVE EDITOR
Sydney Johnston; SydneyJ@pkdcure.org
CONTRIBUTING STAFF
Elise Hoover, MPH; Nicole Harr; Shanna Eiklenborg, MBA
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.
©
2022 Polycystic Kidney Disease Foundation.
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
development of legislation designed to address
racial disparities in kidney care, particularly for
patients with inherited kidney diseases like PKD.
Another topic we cover in this issue is the importance
of having a good relationship with your doctor.
If you're enrolled in our ADPKD Registry, we're
adding some new features to the Registry in the
new year that can help facilitate more productive
conversations with healthcare providers. These
new survey features are designed to collect valuable
information about symptoms such as pain and
fatigue, and the data will be organized in a way that
will make it easy for you to share with your doctor.
If you'd like to share your thoughts about what
you've read in these pages, feel free to send us an
email at pkdlife@pkdcure.org.
Chris Rusconi, Ph.D.
Interim CEO/Chief Research Officer
PKD Foundation
READ AND SHARE THE DIGITAL ISSUE AT PKDCURE.ORG/PKDLIFE
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PKD Life - Fall 2022

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