View PKD Parent sessions
Friday, June 29, 2018
Registration
Intro session for newly diagnosed and first-time attendees
Learn the tips and tricks of getting the most out of PKD Connect Conference from those who have been before! Then, learn about the basics of ADPKD and ARPKD including the basic, genetic and clinical aspects of the disease.
Michal Mrug, M.D., University of Alabama at Birmingham
Lisa Guay-Woodford, M.D. Children's National Medical Center
Pain panel (double session)
Learn the latest in research on how to control and treat pain caused by PKD, followed by a patient and physician panel to discuss real-world scenarios.
Dana Miskulin, M.D. Tufts Medical Center
Marie Hogan, M.D. Mayo Clinic
Justin Prier, Biofit
Nicole Harr, PKD Patient
Cathy Perkins, PKD Patient
Karyn Waxman, PKD Patient
Moderated by Nancy Kaminski, PKD Patient
Pre-emptive kidney transplant
Learn about pre-emptive transplantation as an alternative to dialysis before transplant. In this session, you will gain knowledge about the process, the benefits, and what the journey looks like for both the donors and the recipients.
Cliff Miles, M.D. University of Nebraska Medical Center
Signs of end-stage renal disease
End-stage renal disease (ESRD) has many signs and symptoms, some that you might not even realize. Attend this session to learn what you need to know to recognize and get relief from the symptoms of ESRD.
Frederic Rahbari-Oskoui M.D., M.S., FASN, Emory University School of Medicine
Achieving reproductive success: Innovative treatments to help you plan for the future
If you have PKD and are considering your future reproductive goals, you may have many questions and concerns. In this session, you will learn about preimplantation genetic diagnosis (PGD): what it is, its role in the treatment of PKD and what you can expect from the test.
Jovanna Lekovich, M.D. RMA of New York
Break
Disease progression in ADPKD - Sponsored by Otsuka
In this session, Dr. Dahl will discuss the scientific basis for disease progression in ADPKD, as well as tools currently available to doctors to assess a patient's risk of rapid progression to end-stage renal disease.
Neera Dahl, M.D. Yale University School of Medicine
How to be an advocate for your child or loved one with PKD
Does your loved one have PKD? Join this session to learn how to be their best advocate and provide ongoing support for them.
Kim Beger, PKD Patient Spouse
Dani Buckner, PKD Parent
Peggy Robinson, PKD Patient
Ann Wiesman, PKD Parent
Moderated by Dustin Williams
How to become a Donor-Magnet® pro! 9 proactive steps to finding living kidney donors
Whether you're seeking a transplant now or in the future, this course reveals Donor-Seeking® strategies to empower your communications, inspire interest and a desire to help.
Risa Simon, Transplant First Academy
Reception, Exhibit Hall Opening and Scientific Poster Presentations
Join us for light hors d’oeuvres and mingle with old and new friends over a drink from the cash bar. Visit with the researchers, view their poster presentations (see page XX) and learn about their work. Visit the exhibit hall and check out our exhibitors and sponsors.
Grantham Dinner
Let's celebrate being together at the PKD Connect Conference! Join us for a PKD-friendly dinner as we honor our Chapters, donors and researchers who are dedicated to ending PKD. The dinner is named in honor of the PKD Foundation's late Co-Founder Dr. Jared Grantham.
Saturday, June 30, 2018
Breakfast in Exhibit Hall
Didn't get to visit all the exhibits on Friday? Come on in for coffee, light breakfast and time with our amazing exhibitors! And while you there, shop for some PKD gear at our store.
Update on tolvaptan: the first treatment for ADPKD in the U.S.
The first approved treatment is here! Join us for this special double session all about tolvaptan. We'll start with a presentation and discussion about the drug followed by a panel discussion and Q&A.
Ron Perrone, M.D., Tufts Medical Center
Charalett Diggs, RN, MSN., University of Maryland
Colette Kiszka, PKD Patient
Moderated by Bill Brazell, PKD Patient
I have ADPKD, now what?
Have you recently been diagnosed with ADPKD? Or perhaps you are feeling newly proactive in managing your health? The first part of the session, presented by an ADPKD patient, will offer a simplified road map for navigating your way through important information and early action steps. During the second portion of the session, learn all about the many resources available through the PKD Foundation to help guide you to your best life with ADPKD.
Judy Ehrlich, New England Chapter Coordinator
Terry Watnick, M.D., University of Maryland
Nicole Harr, PKD Foundation Staff
Dialysis 101
There are many types of dialysis, and many decisions to make when you are considering your options. During this session, you will learn all about dialysis, then have plenty of time to ask questions and share experiences with the group.
Ben Cowley, M.D., Oklahoma University Medicine
Refreshments in the Exhibit Hall
SAVE-PKD, an upcoming clinical trial - Sponsored by Sanofi Genzyme
Early research shows Glucosylceramide synthase (GCS) inhibition may represent an approach to treating ADPKD. Learn more about the science behind this approach, and hear about SAVE-PKD, an upcoming clinical trial to explore GCS inhibition in ADPKD patients.
Ali Hariri, M.D. Sanofi Genzyme
Beyond the kidneys: How PKD affects your body
PKD is not just a disease of the kidneys. In this session, learn about some of the non-kidney complications associated with PKD, including aneurysms, affects on the liver (including PLD), gastrointestinal system and heart, and what you can do stay as healthy as possible while living with PKD.
PKD in daily life: Late stage
Get your tips and tricks to stay healthy! Attend this session to learn about nutrition, exercise and more for PKD patients with advanced kidney failure.
Mix and Mingle Lunch
Want to connect with people in your area? Grab a seat at your Chapter table! Want to chat with one of our docs or researchers? Join them for a casual conversation over a delicious and PKD-friendly meal.
Transplant overview - Sponsored by Roger L. Kohn & Kay M. Gilbert Fund
In this session, you will learn about the basic overview of the transplantation process, focusing on the surgical procedure and immediate recovery period.
Patrick Dean, M.D. Mayo Clinic
Tesevatinib-An EGFR Inhibitor in Development for the Treatment of Polycystic Kidney Disease - Sponsored by Kadmon Corporation
Kadmon Corporation has ongoing clinical trials using a drug called tesevatinib that is an inhibitor of epidermal growth factor receptor (EGFR). Join Kadmon Corporation in this session to learn more.
Anjay Rastogi, M.D., Ph.D., University of California Los Angeles
Managing blood pressure in adults with ADPKD
Recent studies have offered insights into best practices for blood pressure control. Attend this session to learn the latest!
Dana Miskulin, M.D. Tufts University
Importance of the patient in therapy development for PKD
Patient participation in clinical studies is imperative to the therapy development process. Join this session to discuss how patients play a part and the things to think about when considering participation in a study.
Darren Wallace, Ph.D. University of Kansas Medical Center
PKD vs. PLD
If you're over the age of 45, living with large liver cysts may be all too familiar to you. Come to this session to review the following issues: Factors affecting growth of liver cysts, risks and benefits of various treatment options, and when liver cyst pain is worrisome.
Advocacy and YOU
You don't have to be on Capitol Hill to make your voice heard! In this session, you will learn from advocacy experts about what you can do to drive positive change.
Alexis Denny, PKD Foundation Staff
Sharon Ladin, Summit Strategies
Nephrectomy panel: If, why and how
As a PKD patient, you may be faced with the decision to remove your cystic kidneys. During this session, you will listen to doctors and patients discuss the ins and outs of the procedure and all the factors to consider before deciding if, when and how to have a nephrectomy.
Terry Watnick, M.D. University of Maryland
David Baron, Ph.D. Chief Scientific Officer, PKD Foundation
Moderated by Michal Mrug, M.D., University of Alabama at Birmingham
Best practices in treating PKD
Learn about how the best physicians take care of their PKD patients. This session is all about best practices and tips for talking to your doctor.
Ron Perrone, M.D. Tufts Medical Center
How to become a Donor-Magnet® Pro! 9 proactive steps to finding living kidney donors
PKD and my family tree: How do your family genetics impact your experience with PKD?
Are you the first in your family to have PKD? Or is your PKD different from what others in your family have experienced (more extreme symptoms, early or late onset, etc.)? This session will discuss how the genetics of PKD may vary, causing your experience to be different from others’, even in your family.
Berenice Gitomer, Ph.D. University of Colorado Denver - Anschutz Medical Campus
Nutrition for PKD daily life
Get your tips and tricks to stay healthy! Attend this session to learn about making healthy choices in the early stages of PKD, including general nutrition tips and other key ways to stay healthy for your everyday life.
Jacob Taylor, Ph.D., RD
Getting involved with PKDF: How you can help make a difference
In this session, PKD patients and volunteers share their experiences and discuss how you can get involved in the fight to end PKD.
PKD Staff
Patient Round Tables
Pick a topic and join the conversation! This is a great way to connect with people dealing with the same things you are. Discussions are not moderated and not guided.
Sunday, July 1, 2018
PKD Foundation Store Open
PKD research update: What is coming for the future of PKD treatments
In this session, you'll enjoy a PKD-friendly breakfast while learning the latest in PKD science and drug development.
Michal Mrug, M.D., University of Alabama at Birmingham, Science Advisory Committee Chair
Foundation Update
Where is the PKD Foundation headed? This session will provide you with information about the strategic priorities and future focus of the Foundation.
Andy Betts, PKD Foundation CEO
PKD Foundation staff
Q&A with the docs
Lingering questions? General curiosities? Everything you wanted to know about PKD, but were (previously) afraid to ask.
Neera Dahl, M.D., Yale University School of Medicine
PKD Store Open
Last chance to get some PKD gear!
Welcome and introductions
Michele Karl, PKD Parent Chapter Coordinator
Kim Berger, PKD Patient Spouse
Moderated by Dustin Williams, PKD Foundation Staff
Basics and clinical care of ARPKD and ADPKD in children
Join us for an overview of the clinical and genetic aspects of PKD, followed by the clinical care of children with autosomal recessive polycystic kidney disease (ARPKD) and autosomal dominant polycystic kidney disease (ADPKD).
Katherine Dell, M.D., Case Western Reserve University
Congenital hepatic fibrosis and other non-renal manifestations of ADPKD and ARPKD in children
What's got you worried, what's got me worried: A look at congenital hepatic fibrosis (CHF) and other non-renal manifestations of ADPKD and ARPKD in children from the doctor's perspective and the patient's perspective.
Ryan Fischer, M.D., Children's Mercy Kansas City
Pre and post transplant: What to expect
Get an insider's view of the transplant process from a parent just like yourself. Hear from PKD parent Ann Wiseman as she discusses all the details she wished she'd known before and after her child's transplant. She will be joined by clinical experts to address questions that may come up throughout transplant the process.
Nutrition round tables
Participate in the nutrition round tables where you are free to mingle around, learn, and debate to improve your child's diet.
Love, guilt and anger: How to manage family life after your child is diagnosed with ARPKD or ADPKD
Coping with a child who has a chronic illness can be very difficult, not only for the child, but for the whole family. This talk will focus on learning coping strategies and parenting when your child has a chronic illness, as well as how to promote positive coping in your children.
Gillian Mayersohn, Phys. D., Children's Mercy Kansas City
Research update and Q&A with the docs
Bring your unanswered questions with you! In this session, you will learn about the latest clinical and research updates and have a chance to ask questions from our experienced doctors.
PKD Parents Pizza Party
General Round Table
Join this session where you will have a chance to interact with parents who you have something in common with: a child with PKD. You will have the opportunity to ask questions, share and hear personal stories from parents and young adults. You will leave knowing you are not alone in this battle.
Brittnee Boyd, PKD Patient
