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PKD National Convention 2016

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Learn the latest on PKD from the experts

Terry Watnick, M.D.Whether you're a patient, parent, caregiver or health care professional, the PKD National Convention 2016 has something for everyone. You'll hear from experts on PKD research, transplants, pain management, lifestyle and nutrition and much more!

Meet the emcee and keynote speaker.

  General sessions

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Friday, June 24, 2016
Time (EDT)TopicSpeakerRoom
10 a.m. - 9 p.m. Registration   South Registration Booth
2:15 - 2:45 p.m. Welcome to the PKD National Convention   Fiesta 5
3 - 4 p.m. Learn the facts: The basics of ADPKD and ARPKD

Whether you've just been diagnosed or are looking for a refresher on the basics of PKD, attend this session to learn what you need to know about the clinical and genetic aspects of autosomal dominant polycystic kidney disease and autosomal recessive polycystic kidney disease.

Terry Watnick, M.D.
John Bissler, M.D.
Fiesta 1 & 2
3 - 4 p.m. Insurance issues for families affected by PKD: Financial security for your loved ones

In this session, you will learn about life, health, disability, long-term care and other insurance options as well as planning strategies for families affected by PKD.

Charles J. Newman, CLU Fiesta 3 & 4
3 - 4 p.m. Transplant A-Z

This session will walk you through the transplantation process, from end-stage renal disease to living with your new kidney.

Patrick Dean, M.D. Yucatan 1 & 2
4:15 - 5:15 p.m. Pain and PKD

Attend this session to learn how you can maximize relief from pain with a focus on drug-free approaches to pain management.

Theodore Steinman, M.D. Fiesta 3 & 4
4:15 - 5:15 p.m. Transplant update: The UNOS perspective

Learn about trends in national data on kidney transplantation, and get specific information about the kidney allocation system (implemented in Dec., 2014) and its impact on PKD patients.

David K. Klassen, M.D. Yucatan 1 & 2
5:15 - 7 p.m. Reception, exhibit hall opening and research 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 and learn about their work sponsored by the PKD Foundation Research Grants Program. Visit the exhibit hall and check out our exhibitors and sponsors.

  Fiesta 6
7 - 9:30 p.m. Celebration dinner

Join us for a PKD-friendly dinner to hear from keynote speaker, Shuvo Roy, Ph.D., the co-inventor of the artificial, implantable kidney, and help us celebrate being together at the 2016 PKD National Convention as we honor our Chapters, donors, researchers and doctors dedicated to ending PKD.

  Fiesta 5
Saturday, June 25, 2016
Time (EDT)TopicSpeakerRoom
8 - 9 a.m. Unopposed exhibit time, store open   Fiesta 6
9 - 9:50 a.m. Tesevatinib in ADPKD

Cyst formation in PKD is driven by a protein called epidermal growth factor receptor (EGFR). Kadmon is starting clinical trials on a drug called tesevatinib that is an effective EGFR inhibitor. Join Kadmon in this session to learn more!

Anjay Rastogi, M.D., Ph.D. Fiesta 1 & 2
9 - 9:50 a.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 this test.

Tanmoy Mukherjee, M.D. Fiesta 3 & 4
9 - 9:50 a.m. Nutrition 101: Optimizing your diet through all stages of PKD

Whether you are living with PKD, have end-stage renal disease or are on dialysis, your diet and nutrition require special care and consideration. Attend this session to learn tips and tricks for making healthy choices in all stages of PKD.

Jacob Taylor, Ph.D., R.D., L.D. Yucatan 1 & 2
10 - 10:50 a.m. Caregiver health: Caring for yourself as you care for someone with PKD   Fiesta 1 & 2
10 - 10:50 a.m. Managing your health as PKD progresses

Prepare now for what may come in the future. This session will cover the stages of chronic kidney disease for a PKD patient, what labs you'll have and how to take care of yourself in each stage of PKD.

Benjamin D. Cowley, Jr., M.D. Fiesta 3 & 4
10 - 10:50 a.m. Stem cells, gene-editing, and the future of PKD therapy

Recent years have seen the introduction of powerful new biomedical technologies like stem cells and gene editing. The PKD Foundation is supporting research in these areas, which have the potential to transform how kidney medicine is practiced. In this session, we will discuss how these technologies can be used to understand PKD today and to develop the treatments of tomorrow.

Benjamin Freedman, Ph.D. Yucatan 1 & 2
10:50 - 11:10 a.m. Unopposed exhibit time, store open   Fiesta 6
11:10 a.m. - noon 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.

Vishal Patel, M.D. Fiesta 1 & 2
11:10 a.m. - noon Unusual genetic presentations of PKD – spontaneous mutation, early onset PKD, etc.

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 Reed-Gitomer, Ph.D. Fiesta 3 & 4
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, we will discuss some of the non-kidney complications associated with PKD, including aneurysms, effects 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.
Neera Dahl, M.D.
Michal Mrug, M.D.
Benjamin D. Cowley, Jr., M.D.
Yucatan 1 & 2
noon - 1 p.m. Clinical trials – why you should participate

Patient participation in clinical studies and trials is imperative to the therapy development process. Drs. Ron Perrone and John Bissler will discuss why this is and things to consider when signing up for a study.

Ron Perrone, M.D.
John Bissler, M.D.
Fiesta 5
1:10 - 2 p.m. A discussion with a clinical study coordinator

Interested in participating in a clinical trial but not sure where to start? Attend this session to learn what a clinical trial is, how it works, and the different phases and types of clinical trials. You will also learn about your rights as a patient if you choose to participate in a clinical trial.

Debbra A. Grier, BSN, RN, MBA, CCRP Fiesta 1 & 2
1:10 - 2 p.m. Nuts and bolts of dialysis

We all hope to avoid it but some of us will need dialysis. Learn about your options and how to prepare for dialysis.

Benjamin D. Cowley, Jr., M.D. Fiesta 3 & 4
1:10 - 2 p.m. Managing blood pressure in adults and teens with PKD

Recent studies have offered insights into best practices for blood pressure control in teens and adults with PKD. Join this session to learn the latest.

Michal Mrug, M.D.
Melissa A. Cadnapaphornchai, M.D.
Yucatan 1 & 2
2:10 - 3 p.m. Living kidney donors network having your donor find YOU!

The goal of the presentation is to educate those attending about living kidney donation and prepare them to effectively communicate their need for a kidney transplant to family members and friends. Participants leave the workshop informed, empowered and inspired to pursue living donation.

Harvey Mysel Fiesta 1 & 2
2:10 - 3 p.m. Why don't they call it polycystic liver and kidney disease?

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, when liver cyst pain is worrisome.

Neera Dahl, M.D. Fiesta 3 & 4
2:10 - 3 p.m. Nephrectomy panel: If, when and how

As a PKD patient, you may be faced with the decision to remove your cystic kidneys. This session will bring together an expert panel to consider and debate this procedure from all perspectives.

Stephen T. Bartlett, M.D.
Patrick G. Dean, M.D.
Ron Perrone, M.D.
Terry Watnick, M.D.
Yucatan 1 & 2
3 - 3:20 p.m. Unopposed exhibit time, store open   Fiesta 6
3:20 - 4:10 p.m. Patient panel: Inspiring stories of empowerment from patients like you

In this panel discussion with PKD patients, you will meet others like you. Hear their stories, struggles and how they find the support and courage to overcome them.

Angela Connelly, PKD Foundation CMO Fiesta 1
3:20 - 4:10 p.m. Living a full life while on dialysis Nancy Feeley Fiesta 2
3:20 - 4:10 p.m. Don't let stress mess with your kidney health

Why your mental and emotional health are important to your managing your life with PKD.

Margot Troutt Keys, LCSW Fiesta 3 & 4
3:20 - 4:10 p.m. Communicating about PKD with patients, providers, and families: Unique struggles in the PKD experience

PKD is a complex disease with a unique illness experience. From a health communication perspective, we know that the way patients communicate about their disease and the messages they receive from others is an important component in their illness experience. In this session we will present the results of a national survey of ADPKD patients which examined the unique struggles and communication challenges that PKD patients face as they deal with PKD.

Katharine J. Head, Ph.D. Yucatan 1 & 2
4:20 - 5:15 p.m. Get the health care you deserve: Tips for effective communication with your health care team

Are you anxious every time you have a doctor’s appointment? Do you leave your appointments with a feeling you did not get your questions answered? In this session, you will learn how to create a partnership with your health care providers so you can get the health care you need and deserve.

Margot Troutt Keys, LCSW
Debbra A. Grier, BSN, RN, MBA, CCRP
Fiesta 3 & 4
4:20 - 5:15 p.m. Emerging therapies for PKD

Learn about PKD therapies in the pipeline, where they are in development and what you need to know about them. Dr. Perrone will cover current clinical trials and the status of emerging therapies including: tolvaptan, pioglitazone, tesevatinib, metformin, niacinamide, and more.

Ron Perrone, M.D. Yucatan 1 & 2
Sunday, June 26, 2016
Time (EDT)TopicSpeakerRoom
8:30 - 9 a.m. Store open    
9 - 10 a.m. Advocacy brunch   Fiesta 5
10 - 11 a.m. Help us change our world: How you can make a difference

PKD patients, advocates and volunteers share their experiences and discuss how you can get involved in the fight to end PKD.

   
10 a.m. - noon Q&A with the doc

Everything you wanted to know about PKD but were (previously) afraid to ask.

Terry Watnick, M.D.
Ron Perrone, M.D.
Benjamin D. Cowley, Jr., M.D.
John Bissler, M.D.
Fiesta 5
noon Store open    

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  Parent sessions

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Friday, June 24, 2016
Time (EDT)TopicSpeakerRoom
10 a.m. - 9 p.m. Registration opens!   South registration booth
2:15 - 3:30 p.m. Welcome and introductions Julia Roberts and Michele Karl, PKD Parents Chapter Co-coordinators  
3:30 - 3:40 p.m. Break    
3:40 - 5:15 p.m. Basics and clinical care of ADPKD and ARPKD in children

Join us for an overview of the clinical and genetic aspects of PKD. We will then dive into the clinical care of children with autosomal recessive polycystic kidney disease and autosomal dominant polycystic kidney disease.

Lisa Guay-Woodford, M.D. and Jeffrey Saland, M.D. Yucatan 3
5:15 - 7 p.m. Reception, exhibit hall opening and research 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 and learn about their work sponsored by the PKD Foundation Research Grants Program. Visit the exhibit hall and check out our exhibitors and sponsors.

  Fiesta 6
7 - 9:30 p.m. Celebration dinner

Join us for a PKD-friendly dinner to hear from keynote speaker, Shuvo Roy, Ph.D., the co-inventor of the artificial, implantable kidney, and help us celebrate being together at the 2016 PKD National Convention as we honor our Chapters, donors, researchers and doctors dedicated to ending PKD.

  Fiesta 5
Saturday, June 25, 2016
Time (EDT)TopicSpeakerRoom
8 - 9 a.m. Unopposed exhibit time, store open   Fiesta 6
9 - 10:45 a.m. 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 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.  
10:45 - 11 a.m. Unopposed exhibit time, store open   Fiesta 6
11 a.m. - noon Nutrition and PKD: Why diet matters and what parents can do to help their kids

This session will discuss the suspected link between diet and PKD progression, the published research and practical tips that parents can use to improve their child's diet.

Jacob Taylor, Ph.D., R.D., L.D.  
Noon - 1 p.m. Clinical trials – why you should participate

Patient participation in clinical studies and trials is imperative to the therapy development process. Dr. Ron Perrone and Dr. John Bissler will discuss why this is and things to consider when signing up for a study.

Ron Perrone, M.D. and John Bissler, M.D. Fiesta 5
1 - 2 p.m. Dialysis and transplantation in children

Dialysis and transplantation greatly affect children's lives. This session will cover everything you need to know as a parent for when your children reach these stages.

Jeffrey Saland, M.D. Fiesta 6
2 - 2:30 p.m. Exhibit hall open   Fiesta 6
2:30 - 3:30 p.m. ARPKD research update

Attend this session to learn the latest in ARPKD research.

Lisa Guay-Woodford, M.D. and Katherine Dell, M.D. Yucatan 3
3:30 - 5:15 p.m. Q&A with the docs

Everything you wanted to know about PKD in children but were (previously) afraid to ask.

Lisa Guay-Woodford, M.D., Jeffrey Saland, M.D. and Katherine Dell, M.D. Yucatan 3
Sunday, June 26, 2016
Time (EDT)TopicSpeakerRoom
9 - 10 a.m. Advocacy action brunch   Fiesta 5
10 - 11 a.m. Help us change the world – how you can be the hero in the fight to end PKD

PKD patients, advocates and volunteers share their experiences and discuss how you can get involved in the fight to end PKD.

  Fiesta 5
11 a.m. - noon Parent-to-parent Q&A

Having a child with PKD can feel isolating at times. This is your chance to talk with other parents who have gone through it all – from financial stresses to dialysis and kidney transplants, growth issues, educational and emotional challenges, and more. Hear their experiences and get your questions answered.

Julia Roberts and Michele Karl, PKD Parents Chapter Co-coordinators Yucatan 3

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  Youth sessions

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Friday, June 24, 2016
Time (EDT)TopicSpeakerRoom
10 a.m. - 9 p.m. Registration opens!   South registration booth
2:15 - 3 p.m. Welcome and introductions Blaire Taylor, LMHC and Jessica Henderson LCSW Sierra 1
3 - 4 p.m. What does PKD look like for me?

Being a young person is hard enough, having PKD only adds to that. In this session, we will talk about what it means to live with PKD, and learn what we need to know to stay healthy and positive.

Melissa Cadnapaphornchai, M.D. Sierra 1
4 - 4:15 p.m. Break    
4:15 - 5:15 p.m. Staying positive, even through tough times

Having a chronic disease as a teenager is a game changer, but you are not alone. Attend this session to talk to other teens who know what you are going through and get tips to help you get through it.

Blaire Taylor, LMHC and Jessica Henderson LCSW Sierra 1
5:15 - 7 p.m. Reception, exhibit hall opening and research poster presentations

Join us for light hors d’oeuvres and mingle with old and new friends. Visit with the researchers, view their poster presentations and learn about their work sponsored by the PKD Foundation Research Grants Program. Visit the exhibit hall and check out our exhibitors and sponsors.

  Fiesta 6
7 - 9:30 p.m. Celebration dinner

Join us for a PKD-friendly dinner to hear from keynote speaker, Shuvo Roy, Ph.D., the co-inventor of the artificial, implantable kidney, and help us celebrate being together at the 2016 PKD National Convention as we honor our Chapters, donors, researchers and doctors dedicated to ending PKD.

  Fiesta 5
Saturday, June 25, 2016
Time (EDT)TopicSpeakerRoom
7:30 - 9:45 a.m. First ride experience at Disney's Animal Kingdom®

Group outing; breakfast to follow

   
10 - 11 a.m. PKD clinical trials: What you should know

Whether you have participated in a clinical trial before or don't even know what it is, attend this session to learn all about it, and the important role you play in finding treatments for PKD.

Melissa Cadnapaphornchai, M.D. Sierra 1
11 - 11:30 a.m. Unopposed exhibit time   Fiesta 6
11:30 a.m. - noon Informal group time

Take a break, have a short nap or just hang out.

Blaire Taylor, LMHC and Jessica Henderson, LCSW Sierra 1
Noon - 1 p.m. Clinical trials – why you should participate

Patient participation in clinical studies and trials is imperative to the therapy development process. Dr. Ron Perrone and Dr. John Bissler will discuss why this is and things to consider when signing up for a study.

Ron Perrone, M.D., John Bissler, M.D. Fiesta 5
1:10 - 2 p.m. Energy drinks, candy and fast food: Is it okay to eat like my friends?

As a teen or young adult, it can seem like such a bore to think about your diet, even if you know it is in your best interest. Learn ways to enjoy every meal, but also stay healthy!

Jacob Taylor, Ph.D., R.D., L.D. Sierra 1
2 - 3 p.m. Managing blood pressure in adults and teens with PKD

Recent studies have offered insights into best practices for blood pressure control in teens and adults with PKD. Join this session to learn the latest.

Michal Mrug, M.D. and Melissa A. Cadnapaphornchai, M.D. Yucatan 1 & 2
3 - 3:20 p.m. Unopposed exhibit time, store open   Fiesta 6
3:20 - 4:15 p.m. TBD    
4:15 - 5:15 p.m. Group discussion

Let's regroup and discuss what we've learned, what makes us nervous and what questions we still have.

Blaire Taylor, LMHC and Jessica Henderson, LCSW Sierra 1
Sunday, June 26, 2016
Time (EDT)TopicSpeakerRoom
9 - 10 a.m. Transitions – how to start managing your own health care Laura Castellanos Reyes Fiesta 5
10 - 11 a.m. Help us change our world: how you can make a difference

PKD patients, advocates and volunteers share their experiences and discuss how you can get involved in the fight to end PKD.

  Fiesta 5
11 a.m. - noon Closing session and goodbye

We had a great time together! Let's share any final thoughts and make sure we know how to stay in touch.

Blaire Taylor, LMHC and Jessica Henderson, LCSW Sierra 1

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