PKD Connect Conference

PKD Connect Conference agenda

View PKD Parent sessions

General sessions

Friday, June 29, 2018

TimeSessionSpeaker(s)Room
9 a.m. - 9 p.m.

Registration

   
1 - 2:45 p.m.

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

Century B
3 - 5 p.m.

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

Century B
3 - 4 p.m.

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

Liberty
3 - 4 p.m.

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

Pershing N
3 - 4 p.m.

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

Pershing S
4 - 4:10 p.m.

Break

   
4:10 - 5:10 p.m.

​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

Liberty
4:10 - 5:10 p.m.

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

Pershing N
4:10 - 5:10 p.m.

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

Pershing S
5:15 - 7 p.m.

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.

  Exhibit Hall
7 - 9:30 p.m.

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.

  Century C

Saturday, June 30, 2018

TimeSessionSpeaker(s)Room
8 - 9 a.m.

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.

  Exhibit Hall
9 - 10:50 a.m.

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

Michal Mrug, M.D., University of Alabama at Birmingham

Charalett Diggs, RN, MSN., University of Maryland

Colette Kiszka, PKD Patient

Moderated by Bill Brazell, PKD Patient

Century B
9 - 10:50 a.m.

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

Liberty
9 - 10:50 a.m.

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

Pershing N
10:50 - 11:10 a.m.

Refreshments in the Exhibit Hall

  Exhibit Hall
11:10 a.m. - Noon

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

Liberty
11:10 a.m. - Noon

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.

Terry Watnick, M.D., University of Maryland

Michal Mrug, M.D., University of Alabama at Birmingham

Neera Dahl, M.D. Yale University School of Medicine

Century B
11:10 a.m. - Noon

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.

Frederic Rahbari-Oskoui M.D., M.S., FASN, Emory University School of Medicine

Pershing N
Noon - 1 p.m.

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.

  Century C 
1:10 - 2 p.m.

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

Century B
1:10 - 2 p.m.

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

Liberty
1:10 - 2 p.m.

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

Pershing N
2 - 2:10 p.m.

Break

   
2:10 - 3 p.m.

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.

Michal Mrug, M.D., University of Alabama at Birmingham

Darren Wallace, Ph.D. University of Kansas Medical Center

Charalett Diggs, RN, MSN., University of Maryland

Century B
2:10 - 3 p.m.

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.

Neera Dahl, M.D. Yale University School of Medicine

Liberty
2:10 - 3 p.m.

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

Pershing N
3 - 3:20 p.m.

Refreshments in the Exhibit Hall

  Exhibit Hall
3:20 - 4:10 p.m.

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.

Cliff Miles, M.D. University of Nebraska Medical Center

Terry Watnick, M.D. University of Maryland

Patrick Dean, M.D. Mayo Clinic

David Baron, Ph.D. Chief Scientific Officer, PKD Foundation

Moderated by Michal Mrug, M.D., University of Alabama at Birmingham

Century B
3:20 - 4:10 p.m.

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

Judy Ehrlich, New England Chapter Coordinator

Liberty
3:20 - 4:10 p.m.

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

Pershing N
4:10 - 4:20 p.m.

Break

   
4:20 - 5:15 p.m.

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

Century B
4:20 - 5:15 p.m.

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

Liberty
4:20 - 5:15 p.m.

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

Pershing N
4:20 - 5:15 p.m.

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

Pershing S
5:15 - 6:30 p.m.

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.

  Century C

Sunday, July 1, 2018

TimeSessionSpeaker(s)Room
8 - 8:30 a.m.

PKD Foundation Store Open

   
8:30 - 9:15 a.m.

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

Century C
9:15 - 10 a.m.

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

David Baron, Ph.D. Chief Scientific Officer, PKD Foundation

PKD Foundation staff

Century C
10 a.m. - Noon

Q&A with the docs

Lingering questions? General curiosities? Everything you wanted to know about PKD, but were (previously) afraid to ask.

Michal Mrug, M.D., University of Alabama at Birmingham, Science Advisory Committee Chair

Ben Cowley, M.D., Oklahoma University Medicine

Neera Dahl, M.D., Yale University School of Medicine

Century C
Noon

PKD Store Open

Last chance to get some PKD gear!

   

PKD Parent sessions

Friday, June 29, 2018

TimeSessionSpeaker(s)Room
10 a.m.

Registration

   
3 - 4 p.m.

Welcome and introductions

Michele Karl, PKD Parent Chapter Coordinator

 
3:30 - 3:40 p.m.

Break

   
4:10 - 5:10 p.m.

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 Berger, PKD Patient Spouse

Dani Buckner, PKD Parent

Peggy Robinson, PKD Patient

Ann Wiesman, PKD Parent

Moderated by Dustin Williams, PKD Foundation Staff

 

Saturday, June 30, 2018

TimeSessionSpeaker(s)Room
9 - 10:50 a.m.

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).

Lisa Guay-Woodford, M.D. Children's National Medical Center

Katherine Dell, M.D., Case Western Reserve University

Roanoke 
11 a.m. - Noon

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

Roanoke 
1:10 - 2 p.m.

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.

Ann Wiesman, PKD Parent

Lisa Guay-Woodford, M.D. Children's National Medical Center

Katherine Dell, M.D., Case Western Reserve University

Roanoke 
2:10 - 3 p.m.

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.

Dani Buckner, PKD Parent

Michele Karl, PKD Parent Chapter Coordinator

Ann Wiesman, PKD Parent

Roanoke
3:20 - 4:20 p.m.

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

Roanoke 
4:20 - 5:30 p.m.

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.

Lisa Guay-Woodford, M.D. Children's National Medical Center

Ryan Fischer, M.D., Children's Mercy Kansas City

Katherine Dell, M.D., Case Western Reserve University

Roanoke 
6 - 8 p.m.

PKD Parents Pizza Party

 

 

Sunday, July 1, 2018

TimeSessionSpeaker(s)Room
10 a.m. - Noon

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.

Michele Karl, PKD Parent Chapter Coordinator

Brittnee Boyd, PKD Patient