PKD National Convention

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Thank you for joining us in Orlando!

Terry Watnick, M.D.PKD National Convention 2016 attendees heard from experts on PKD research, transplants, pain management, lifestyle and nutrition and much more!

Meet our emcee and keynote speaker.

  General sessions

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Friday, June 24, 2016
Time (EDT)TopicSpeaker(s)Room
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.
Terry Watnick, M.D.

John Bissler, M.D.
John Bissler, M.D.
Fiesta 1-4
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
Charles J. Newman, CLU
Coronado C-E
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.
Patrick Dean, M.D.
Yucatan 1-3
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.

Ted Steinman, M.D.
Ted Steinman, M.D.
Coronado C-E
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.
David K. Klassen, M.D.
Yucatan 1-3
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.

Katherine M. Dell, M.D.
Katherine M. Dell, M.D.

Benjamin Freedman, Ph.D.
Benjamin Freedman, Ph.D.

Stephen Parnell, Ph.D.
Stephen Parnell, Ph.D.

Vishal Patel, M.D.
Vishal Patel, M.D.

Bonnie Blazer-Yost, Ph.D.
Bonnie Blazer-Yost, Ph.D.

Timothy Kline, Ph.D.
Timothy Kline, Ph.D.

Irfana Soomro, MBBS
Irfana Soomro, MBBS

Marcello Cassini, Ph.D.
Marcello Cassini, Ph.D.

Jaqueline Peda, Ph.D.
Jaqueline Peda, Ph.D.

Greg Mainolfi
Greg Mainolfi
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.

Kriste Lewis
Kriste Lewis

Suzanne Ruff
Suzanne Ruff

Shuvo Roy, Ph.D.
Shuvo Roy, Ph.D.

David Baron, Ph.D.
David Baron, Ph.D.

Jackie Hancock, Jr., CFRE
Jackie Hancock, Jr., CFRE

 
View dinner menu
Fiesta 5
Saturday, June 25, 2016
Time (EDT)TopicSpeaker(s)Room
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.
Anjay Rastogi, M.D., Ph.D.
Fiesta 1-4
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.
Tanmoy Mukherjee, M.D.
Coronado C-E
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.
Jacob Taylor, Ph.D., R.D.
Yucatan 1-3
10 - 10:50 a.m. The importance of self care: Caring for yourself as you care for someone with PKD

Caring for someone with PKD can take a toll on your own health. In this session, we will discuss self care, signs that may show you need more of it, and how to craft your own self-care plan based on your individual needs.

Renee Dean
Renee Dean
Fiesta 1-4
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.
Benjamin D. Cowley, Jr., M.D.
Coronado C-E
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.
Benjamin Freedman, Ph.D.
Yucatan 1-3
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.
Vishal Patel, M.D.
Fiesta 1-4
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 Gitomer, Ph.D.
Berenice Gitomer, Ph.D.
Coronado C-E
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.
Terry Watnick, M.D.

Neera Dahl, M.D.
Neera Dahl, M.D.

Michal Mrug, M.D.
Michal Mrug, M.D.

Benjamin D. Cowley, Jr., M.D.
Benjamin D. Cowley, Jr., M.D.
Yucatan 1-3
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.
Ron Perrone, M.D.

John Bissler, M.D.
John Bissler, M.D.

 
View lunch menu
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 Grier, RN, B.S.N., M.B.A., CCRP
Debbra Grier, RN, B.S.N., M.B.A., CCRP
Fiesta 1-4
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.
Benjamin D. Cowley, Jr., M.D.
Coronado C-E
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.
Michal Mrug, M.D.

Melissa A. Cadnapaphornchai, M.D.
Melissa A. Cadnapaphornchai, M.D.
Yucatan 1-3
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
Harvey Mysel
Fiesta 1-4
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.
Neera Dahl, M.D.
Coronado C-E
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.
Stephen T. Bartlett, M.D.

Michael Angelis, M.D.
Michael Angelis, M.D.

Ron Perrone, M.D.
Ron Perrone, M.D.

Terry Watnick, M.D.
Terry Watnick, M.D.
Yucatan 1-3
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
Angela Connelly
Fiesta 7 & 8
3:20 - 4:10 p.m. Living a full life while on dialysis Nancy Feeley, CRNP
Nancy Feeley, CRNP
Fiesta 1-4
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
Margot Troutt Keys, LCSW
Coronado C-E
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 Head, M.D.
Katharine Head, M.D.
Yucatan 1-3
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
Margot Troutt Keys, LCSW

Debbra Grier, RN, B.S.N., M.B.A., CCRP
Debbra Grier, RN, B.S.N., M.B.A., CCRP
Coronado C-E
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.
Ron Perrone, M.D.
Yucatan 1-3
Sunday, June 26, 2016
Time (EDT)TopicSpeaker(s)Room
9 - 10 a.m. Advocacy and you

Everyone is an advocate! PKD patients, family and friends know better than anyone what it is like to live with PKD. Members of Congress depend on their constituents to bring important information to their attention. One personal story and one relationship can make a significant difference.

Karen Thurman, Congresswoman
Karen Thurman, Congresswoman
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.

 
View brunch menu
Fiesta 5
11 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.
Terry Watnick, M.D.

Ron Perrone, M.D.
Ron Perrone, M.D.

Benjamin D. Cowley, Jr., M.D.
Benjamin D. Cowley, Jr., M.D.

John Bissler, M.D.
John Bissler, M.D.
Fiesta 5

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  Parent sessions

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Friday, June 24, 2016
Time (EDT)TopicSpeaker(s)Room
10 a.m. - 9 p.m. Registration opens!   South registration booth
2:15 - 3:30 p.m. Welcome and introductions Julia Roberts
Julia Roberts

Michele Karl
Michele Karl
Coronado F & G
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.
Lisa Guay-Woodford, M.D.

Jeffrey M. Saland, M.D.
Jeffrey M. Saland, M.D.
Coronado F & G
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.

Katherine M. Dell, M.D.
Katherine M. Dell, M.D.

Benjamin Freedman, Ph.D.
Benjamin Freedman, Ph.D.

Stephen Parnell, Ph.D.
Stephen Parnell, Ph.D.

Vishal Patel, M.D.
Vishal Patel, M.D.

Bonnie Blazer-Yost, Ph.D.
Bonnie Blazer-Yost, Ph.D.

Timothy Kline, Ph.D.
Timothy Kline, Ph.D.

Irfana Soomro, MBBS
Irfana Soomro, MBBS

Marcello Cassini, Ph.D.
Marcello Cassini, Ph.D.

Jaqueline Peda, Ph.D.
Jaqueline Peda, Ph.D.

Greg Mainolfi
Greg Mainolfi
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.

Kriste Lewis
Kriste Lewis

Suzanne Ruff
Suzanne Ruff

Shuvo Roy, Ph.D.
Shuvo Roy, Ph.D.

David Baron, Ph.D.
David Baron, Ph.D.

Jackie Hancock, Jr., CFRE
Jackie Hancock, Jr., CFRE

 
View dinner menu
Fiesta 5
Saturday, June 25, 2016
Time (EDT)TopicSpeaker(s)Room
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 T. Fischer, M.D.
Ryan T. Fischer, M.D.
Coronado F & G
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.
Jacob Taylor, Ph.D., R.D.
Coronado F & G
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.
Ron Perrone, M.D.

John Bissler, M.D.
John Bissler, M.D.

 
View lunch menu
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 M. Saland, M.D.
Jeffrey M. Saland, M.D.
Coronado F & G
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.
Lisa Guay-Woodford, M.D.

Katherine M. Dell, M.D.
Katherine M. Dell, M.D.
Coronado F & G
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.
Lisa Guay-Woodford, M.D.

Jeffrey M. Saland, M.D.
Jeffrey M. Saland, M.D.

Katherine M. Dell, M.D.
Katherine M. Dell, M.D.
Coronado F & G
Sunday, June 26, 2016
Time (EDT)TopicSpeaker(s)Room
9 - 10 a.m. Advocacy and you

Everyone is an advocate! PKD patients, family and friends know better than anyone what it is like to live with PKD. Members of Congress depend on their constituents to bring important information to their attention. One personal story and one relationship can make a significant difference.

Karen Thurman, Congresswoman
Karen Thurman, Congresswoman
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.

 
View brunch menu
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
Julia Roberts

Michele Karl
Michele Karl
Coronado F & G

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  Youth sessions

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Friday, June 24, 2016
Time (EDT)TopicSpeaker(s)Room
10 a.m. - 9 p.m. Registration opens!   South registration booth
2:15 - 3 p.m. Welcome and introductions Blaire Taylor, LMHC
Blaire Taylor, LMHC

Jessica Henderson, LCSW
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 A. Cadnapaphornchai, M.D.
Melissa A. 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
Blaire Taylor, LMHC

Jessica Henderson, LCSW
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.

Katherine M. Dell, M.D.
Katherine M. Dell, M.D.

Benjamin Freedman, Ph.D.
Benjamin Freedman, Ph.D.

Stephen Parnell, Ph.D.
Stephen Parnell, Ph.D.

Vishal Patel, M.D.
Vishal Patel, M.D.

Bonnie Blazer-Yost, Ph.D.
Bonnie Blazer-Yost, Ph.D.

Timothy Kline, Ph.D.
Timothy Kline, Ph.D.

Irfana Soomro, MBBS
Irfana Soomro, MBBS

Marcello Cassini, Ph.D.
Marcello Cassini, Ph.D.

Jaqueline Peda, Ph.D.
Jaqueline Peda, Ph.D.

Greg Mainolfi
Greg Mainolfi
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.

Kriste Lewis
Kriste Lewis

Suzanne Ruff
Suzanne Ruff

Shuvo Roy, Ph.D.
Shuvo Roy, Ph.D.

David Baron, Ph.D.
David Baron, Ph.D.

Jackie Hancock, Jr., CFRE
Jackie Hancock, Jr., CFRE

 
View dinner menu
Fiesta 5
Saturday, June 25, 2016
Time (EDT)TopicSpeaker(s)Room
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 A. Cadnapaphornchai, M.D.
Melissa A. 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
Blaire Taylor, LMHC

Jessica Henderson, LCSW
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.
Ron Perrone, M.D.

John Bissler, M.D.
John Bissler, M.D.

 
View lunch menu
Fiesta 5
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.
Michal Mrug, M.D.

Melissa A. Cadnapaphornchai, M.D.
Melissa A. Cadnapaphornchai, M.D.
Yucatan 1-3
2 - 3 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.
Jacob Taylor, Ph.D., R.D.
Sierra 1
3 - 3:20 p.m. Unopposed exhibit time, store open   Fiesta 6
3:20 - 4:15 p.m. Connect – Share – Change: You are the future!

Help us make a difference in your community. PKD Foundation staff will discuss ways for teens to get involved, connect with others and join the fight to #EndPKD.

PKD Foundation staff Sierra 1
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
Blaire Taylor, LMHC

Jessica Henderson, LCSW
Jessica Henderson, LCSW
Sierra 1
Sunday, June 26, 2016
Time (EDT)TopicSpeaker(s)Room
9 - 10 a.m. What is your role in health care transition? How to start managing your own health care

Transitioning from pediatric to adult care can be a vulnerable time for you. Attend this session to learn strategies to make this process smoother. Learn how to manage your care independently, feel empowered to make decisions and get the confidence you need to coordinate your own care with multiple health care providers.

Laura Castellanos, M.D.
Laura Castellanos, M.D.
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.

 
View brunch menu
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
Blaire Taylor, LMHC

Jessica Henderson, LCSW
Jessica Henderson, LCSW
Sierra 1

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Michael Angelis, M.D.Michael Angelis, M.D.

Florida Hospital Transplant Institute

Michael Angelis, M.D., Is the Surgical Director of Kidney Transplant and the Vice-Chair of Transplants at Florida Hospital, in Orlando. He received his undergraduate degree from McGill University and subsequently graduated from Jefferson Medical College, Pa. He completed his general surgery residency at University of Hawaii John A. Burns School of Medicine and abdominal transplant fellowship at University of Miami. He is appointed at both as Associate Professor Surgery at University of Central Florida School of Medicine and Assistant Professor of Surgery at Florida State School of Medicine.

He took over the transplant program at Florida Hospital in 2003 and developed it into a multi-organ transplant program, he performs kidney, pancreas and liver transplant.

David Baron, Ph.D.David Baron, Ph.D.

PKD Foundation, Chief Scientific Officer

David Baron, Ph.D., joined the PKD Foundation after serving as Vice President of Nonclinical Safety Evaluation for the U.S. and European Union for Takeda Pharmaceuticals (Deerfield, Ill.). Dr. Baron, who has PKD and received a living donor transplant in 2009, has a strong personal and biomedical interest in the Foundation's emphasis on research. During his career he has focused on the movement of electrolytes and water across normal and abnormal epithelia, which relates directly to kidney function. Dr. Baron received his B.A. in biology and Ph.D. in anatomy from the University of Chicago. He completed his postdoctoral fellowship in pathology and pharmacology at the Medical University of South Carolina. With a National Institutes of Health grant, Dr. Baron founded the Core Structure-Function Laboratory in the Department of Pharmacology and joined their faculty. He has been a grant reviewer for the National Cancer Institute, given numerous invited seminars and has served on several national scientific boards.

Stephen T. Bartlett, M.D.Stephen T. Bartlett, M.D.

University of Maryland School of Medicine

Stephen T. Bartlett, M.D., received his B.A. degree from Johns Hopkins University and his medical degree from the University of Chicago Pritzker School of Medicine. He completed residency training in general surgery at the University of Pennsylvania and a fellowship in vascular surgery at Northwestern University. He is the Peter Angelos Distinguished Professor of Surgery and Chairman for the Department of Surgery at the University of Maryland School of Medicine and the Senior Vice President and Surgeon-in-Chief for the University of Maryland Medical System. He is responsible for the oversight and development of the surgical teams at each hospital within the medical system and leads one of the country's most highly National Institutes of Health-funded departments of surgery at the University of Maryland School of Medicine.

A transplant and vascular surgeon by training, Dr. Bartlett built the University of Maryland Medical Center's kidney and pancreas transplant program into one of the largest and most successful programs in the United States. He continues to spearhead basic science research to improve the outcomes of patients with vascularized composite allografts.

John Bissler, M.D.John Bissler, M.D.

FedEx Chair of Excellence
Tuberous Sclerosis Center of Excellence
Division of Nephrology at St. Jude Children's Research Hospital and LeBonheur Children's Hospital

John Bissler. M.D., is a pediatric nephrologist in Memphis, Tennessee. He is the Director of the Tuberous Sclerosis Center of Excellence and the Director of the Division of Nephrology at St. Jude Children's Research Hospital and LeBonheur Children's Hospital. Dr. Bissler is also a Professor of Pediatrics at the University of Tennessee. He received his medical degree from Northeast Ohio Medical University and has been in practice for more than 20 years. He is Board certified in pediatrics and pediatric nephrology with expertise in angioedema, kidney disease and tuberous sclerosis. Dr. Bissler is a member of the PKD Foundation Scientific Advisory Committee.

Bonnie Blazer‐Yost, Ph.D.Bonnie Blazer‐Yost, Ph.D.

Indiana University‐Purdue University Indianapolis

Bonnie Blazer‐Yost, Ph.D., joined Indiana University‐Purdue University Indianapolis (IUPUI) as an Assistant Professor in 1993, and is currently a Professor in the Biology Department at IUPUI with appointments in the Departments of Cellular and Integrative Physiology and Anatomy and Cell Biology at the Indiana University School of Medicine. She obtained her bachelor's degree from Lebanon Valley College in central Pennsylvania, her Ph.D degree from the University of Pennsylvania, and post‐doctoral training from Cambridge University in Great Britain.

Dr. Blazer‐Yost is a renal physiologist, whose studies focus on how electrolyte transport, particularly in kidney cells, contributes to disease. Her studies led her to investigate one of the components involved in the growth of cysts in autosomal dominant polycystic kidney disease (ADPKD), suggesting that certain drugs, including pioglitazone, might be effective agents to treat ADPKD.

Melissa A. Cadnapaphornchai, M.D.Melissa A. Cadnapaphornchai, M.D.

Children's Hospital Colorado on Anschutz Medical Campus

Melissa A. Cadnapaphornchai, M.D., treats children with renal disorders at The Kidney Center at Children's Hospital Colorado, and has served as Director of Pediatric Research at the University of Colorado Anschutz Medical Campus Polycystic Kidney Disease Research Group since 2001. Dr. Cadnapaphornchai joined the faculty of Children's Hospital Colorado and the Departments of Pediatrics and Medicine at University of Colorado School of Medicine (UCSOM) in 2000. She graduated from the University of Michigan Medical School in 1993. Following her pediatric residency training at UCSOM, she completed a clinical fellowship in pediatric nephrology at the University of Virginia Medical Center in 1998, as well as a fellowship in pediatric nephrology at UCSOM in 2000.

Marcelo Cassini, M.D., Ph.D.Marcelo Cassini, M.D., Ph.D.

Yale School of Medicine

Marcelo Cassini, M.D., Ph.D., is a Postdoctoral Associate in Medicine at the Yale School of Medicine. He earned an M.S. degree in kidney transplantation and a Ph.D. in kidney injury from the University of Sao Paulo in Brazil. He received his medical degree at Federal Fluminense University in Rio de Janeiro, Brazil, and completed residency training in surgery and urology at State University of Rio de Janeiro.

Dr. Cassini's research, under the guidance of mentor Lloyd Cantley, M.D., at Yale School of Medicine, focuses on elucidating the role of macrophages in the pathogeneses of PKD. Before joining Dr. Cantley's laboratory, Dr. Cassini worked with many PKD patients in Brazil and completed his Ph.D research focusing on an animal model of ischemia and reperfusion, using the fluorescence and spectroscopy techniques to predict a better outcome of the kidneys for transplantation.

Laura Castellanos, M.D.Laura Castellanos, M.D.

Icahn School of Medicine at Mount Sinai, New York

Laura Castellanos, M.D., earned her medical degree from Universidad Industrial de Santander (UIS), Bucaramanga, Colombia, completed her pediatric residency training at the Lincoln Medical and Mental Health Center in New York, and is currently completing a pediatric nephrology fellowship at Icahn School of Medicine at Mount Sinai, also in New York. Dr. Castellanos co-authored a publication titled "Term Infant with Ambiguous Genitalia" and recently presented a poster on "Health Literacy in Patients with Chronic Kidney Disease" at the Renal Research Institute's 18th International Conference on Dialysis. Dr. Castellanos holds professional affiliations with the American Academy of Pediatrics and the American Society of Pediatric Nephrology.

Angela ConnellyAngela Connelly

PKD Foundation, Chief Marketing and Communications Officer

Angela Connelly has been a marketing communications leader for nearly 20 years, helping organizations reach business goals, engage audiences, and strengthen brand. Her most recent role was the Director of Communications for Sisters of Charity of Leavenworth Health System (SCLHS). This 11-hospital system was based in Lenexa, Kan., until a recent relocation to Denver, Colo. She was responsible for managing corporate communications, branding, and overseeing their digital strategy. Connelly created the first strategic marketing communication plan for SCLHS. Implementation contributed to increased employee engagement and improved community perception. She also implemented a social media pilot that resulted in nearly 2,000 followers in the first year.

Before SCLHS Connelly worked for HCA Midwest, where she was responsible for marketing and communications for several hospitals, with corporate communications roles. She began her communications career providing public relations support for the Kansas City Chapter of the American Red Cross.

Connelly received her Bachelor of Arts at the University of Missouri-Columbia (MU), where she studied English and journalism. She received her MBA through the Bloch executive program at the University of Missouri-Kansas City (UMKC). The MBA program focused on leadership, entrepreneurship, and international work. One project took her to Beijing and Shanghai where she met with non-profit groups to understand the state of health care in China.

Connelly volunteers as a board member for the International Association of Business Communicators, Kansas City Chapter (KC/IABC). In leading their social media efforts, followers were increased by 28 percent last year. She is also involved in UMKC alumni efforts.

Benjamin D. Cowley, Jr., M.D.Benjamin D. Cowley, Jr., M.D.

University of Oklahoma Health Sciences Center
Board Chair, Executive Committee, PKD Foundation Board of Trustees

Benjamin D. Cowley, Jr., M.D., lives in Oklahoma City, Oklahoma. He is the Chief of Nephrology & Hypertension and John Gammill Professor in Polycystic Kidney Disease at the Oklahoma Health Sciences Center. Dr. Cowley has been involved in PKD research for more than 20 years, publishing numerous articles and presenting on PKD at various conferences and events. He trained under Dr. Jared Grantham, co-founder of the PKD Foundation and distinguished physician at the University of Kansas Medical Center. He currently serves as the Board Chair of the PKD Foundation Board of Trustees. Dr. Cowley completed his post-graduate education in internal medicine, nephrology and biochemistry at the University of Kansas Medical Center. He received his M.D. degree from Baylor College of Medicine and attended undergraduate school at Rice University. Dr. Cowley has been named one of Oklahoma's "Top Doctors" by Castle Connolly Medical Ltd. for the past five years.

Neera Dahl, M.D.Neera Dahl, M.D.

Yale University School of Medicine

Neera Dahl is an Associate Professor of Nephrology at the Yale University School of Medicine. She graduated with both an M.D. and Ph.D. from Tufts University and then went on to an internship, residency and fellowship training at the Beth Israel Deaconess Medical Center of Harvard Medical School. In 2007, she started working at Yale, where she focuses on building the Inherited Kidney Disease Program. She is also the primary investigator for several clinical studies in autosomal dominant polycystic kidney disease.

Patrick Dean, M.D.Patrick Dean, M.D.

Mayo Clinic

Patrick G. Dean, M.D. is a Consultant and Assistant Professor of Surgery in the Division of Transplantation Surgery at Mayo Clinic Rochester. He received his undergraduate degree from Princeton University and subsequently graduated from the University of Alabama School of Medicine in Birmingham, Ala. He completed his general surgery residency and fellowship in abdominal transplantation surgery at the Mayo Clinic in Rochester, Minn. He was appointed to the faculty at Mayo Clinic in 2006. In addition to his clinical duties, Dr. Dean is the director of the abdominal transplantation surgery fellowship program.

Dr. Dean's clinical and research interests include kidney and pancreas transplantation, preemptive kidney transplantation, living donor kidney transplantation, transplantation for polycystic kidney disease and antibody-mediated kidney graft injury. He is a Fellow of the American College of Surgeons, and a member of both the American Society of Transplant Surgeons and the American Society of Transplantation. He is currently Secretary/Treasurer of the Priestley Society.

Renee DeanRenee Dean

Renee Dean is a licensed MFT psychotherapist with a private practice in San Francisco. In 2012, she experienced becoming a kidney donor for her husband Mark who has PKD. The transplant was successful and both Renee and her husband are continuing to do well.

She balances her busy psychotherapy private practice and vibrant family life with two boys and her husband as best as she can, taking time for reading, music and cooking when she can find it. Renee is excited to be part of the PKD convention and knows first hand the challenges and the importance of making time for self care.

Katherine M. Dell, M.D.Katherine M. Dell, M.D.

Case Western Reserve University

Katherine M. Dell, M.D., is a physician-scientist and pediatric nephrologist. She has 18 years of experience in autosomal recessive polycystic kidney disease (ARPKD) research and the clinical care of ARPKD patients. After receiving her medical degree from Harvard Medical School and completing pediatrics and pediatric nephrology training at Children's Hospital of Philadelphia, Dr. Dell joined the faculty of Case Western Reserve University (CWRU). She also serves as the Director of Clinical and Translational Research for the Pediatric Institute at the Cleveland Clinic. The overall focus of Dr. Dell's research has been identifying factors that contribute to ARPKD kidney and liver disease progression and applying novel MRI techniques to assess that progression. These MRI methodologies, which have been developed in collaboration with Dr. Dell's CWRU colleagues, have the potential to provide a key element necessary to design and implement clinical trials of novel and existing therapies with a goal to offer new treatments for ARPKD patients.

Nancy Feeley, CRNPNancy Feeley, CRNP

Johns Hopkins Medicine

Nancy Feeley, CRNP, has worked in adult nephrology at Johns Hopkins Medicine for 25 years. She received her nursing degree from Townson University in Maryland. She then went on to receive her clinical nurse specialist Master of Science degree with a minor in education from the University of Maryland, and completed her post-graduate studies at the Johns Hopkins University.

Ryan T. Fischer, M.D.Ryan T. Fischer, M.D.

Children's Mercy Hospital, Kansas City

Ryan T. Fischer, M.D., is a board-certified Pediatric Gastroenterologist and Transplant Hepatologist at Children's Mercy Hospital in Kansas City. After a pediatric residency at Nationwide Children's Hospital in Columbus, Ohio, Dr. Fischer completed his pediatric gastroenterology and transplant hepatology fellowships at the renowned transplant center at Children's Hospital of Pittsburgh. He then joined Children's Mercy in Kansas City to be a part of their team at the Liver Care Center, which focuses on the treatment of all forms of liver disease, particularly liver fibrosis, drug-induced liver injury and transplantation. In the laboratory, Dr. Fischer's work focuses on evaluating the engineering of T cells for the induction of tolerance in transplantation, and examining the role of certain proteins and cell markers and how they impact organ rejection.

Benjamin Freedman, Ph.D.Benjamin Freedman, Ph.D.

University of Washington

Dr. Benjamin Freedman, Ph.D., is an Assistant Professor of Medicine at University of Washington in Seattle. Dr. Freedman first became fascinated with stem cells as a University of Pennsylvania undergraduate and a University of California, Berkeley Ph.D. student. As a postdoctoral fellow at Harvard, he performed pioneering studies using pluripotent stem cells to re-create features of human PKD. The Freedman laboratory is currently applying this "kidney in a dish" technology to study how PKD works, discover new drugs and innovate strategies for kidney regeneration.

Berenice Gitomer, Ph.D.Berenice Gitomer, Ph.D.

University of Colorado Anschutz Medical Campus

Berenice Gitomer, Ph.D., is a Research Professor of Medicine in the Division of Renal Diseases and Hypertension and an Associate Director of the Polycystic Kidney Disease Research Group at the University of Colorado Anschutz Medical Campus. She joined the Renal Division at the University of Colorado as a full-time faculty member in 2003 to study the genetics of autosomal dominant polycystic kidney disease (ADPKD). She obtained her doctoral degree from Trinity College, Dublin, Ireland before coming to the U.S. to complete a postdoctoral fellowship at the National Institutes of Health. She subsequently joined the faculty at the University of Texas Southwestern Medical Center to study the genetics of kidney stone disease. Dr. Gitomer's research focuses on the identification of factors that affect the severity and progression of ADPKD, with the goal of identifying new therapeutic targets to slow disease progression.

Debbra Grier, RN, B.S.N., M.B.A., CCRPDebbra Grier, RN, B.S.N., M.B.A., CCRP

University of Pennsylvania, School of Medicine, Renal, Electrolyte, and Hypertension Division

Debbra Grier, RN, B.S.N., M.B.A., CCRP, received her nursing degree from Downstate Medical Center in Brooklyn, N.Y., and a Certificate in Clinical Research from the University of Pennsylvania, where she currently works as an Administrative Director of Clinical Research—Nephrology. She is also the Clinical Coordinator of the PKD Center in the Renal, Electrolyte, and Hypertension Division of the Perelman School of Medicine at the University of Pennsylvania. She works in collaboration with the Research Director and the Division Chief in overseeing the management and operations of the clinical research program. She provides clinical and administrative support to the comprehensive PKD Center and PKD research program.

Lisa Guay-Woodford, M.D.Lisa Guay-Woodford, M.D.

Children's National Health System

Lisa Guay-Woodford, M.D., is the Richard L. Hudson Professor of Pediatrics and the Associate Vice President for Clinical and Translational Research at The George Washington University. She also serves as Director of the Center for Translational Science at Children's National Medical Center (CNMC) and Director of the Clinical and Translational Science Institute-Children's National. She is a Pediatric Nephrologist and an internationally-recognized investigator, whose research focuses on identifying clinical and genetic factors involved in the pathogenesis of inherited renal disorders, most notably autosomal recessive polycystic kidney disease. Before joining CNMC, she founded and served as Director of the Inherited Renal Disorders Program at the Children's Hospital of Alabama, established the NIH P30-funded UAB Hepatorenal Fibrocystic Disease Research and Translational Core Center and was the founding Director of the UAB Center for Clinical and Translational Science. She plays an active role on the PKD Foundation's Board of Trustees.

Jackie Hancock, Jr., CFREJackie Hancock, Jr., CFRE

PKD Foundation, Chief Executive Officer

Jackie D. Hancock, Jr., joined the PKD Foundation as CEO in 2013. He has extensive experience in nonprofit executive management, health care delivery systems, advocacy and fundraising, and has led the Foundation’s partnership with kidney organizations for advocacy and research issues. He also navigated a partnership with the American Society of Nephrology to honor PKD Foundation co-founder Jared Grantham, M.D., through an endowed nephrology fellowship. He has served as CEO for the National Foundation for Transplants and as a member of its Board of Directors. He has also served on the Patient Advisory Committee of the National Heart Lung Blood Institute at the National Institutes of Health, on several advisory committees with Organ Procurement Organizations, and as a member of Donate Life Tennessee's Advisory Board. Jackie graduated from Park University, Parkville, Mo., with a bachelor's degree in psychology, and earned the designation of Certified Fund Raising Executive from the Association of Fundraising Professionals. He will graduate in 2016 with a Masters Degree in operations management from the University of Arkansas School of Industrial Engineering.

Katharine Head, M.D.Katharine Head, M.D.

Indiana University‐Purdue University Indianapolis

Katharine Head, M.D., is an assistant professor in the Department of Communication Studies at Indiana University‐Purdue University Indianapolis. She specializes in health communication, studying social influences in applied health communication contexts, health message design, health intervention design and evaluation, and the use of new media in health. Her work has been published in journals such as Social Science & Medicine, Journal of Health Communication, and the Journal of Communication in Healthcare. She regularly presents her work at conferences such as the National Communication Association annual conference and the annual meeting of the American Public Health Association.

Jessica Henderson, LCSWJessica Henderson, LCSW

Children's Home Society of Florida

Jessica Henderson is a licensed clinical social worker in the state of Florida with five years of clinical experience in providing therapeutic services to children and families in outpatient and medical settings. Jessica specializes in trauma informed care and early childhood mental health. Jessica is currently the Clinical Supervisor of Outpatient Services with the Children's Home Society of Florida. She supervises a team of therapists in providing trauma informed counseling services to children and families involved in Jacksonville's child welfare system.

Jessica received her Bachelor of Science at Florida State University, where she studied Family and Child Sciences and Social Welfare. She received her Master of Social Work from the University of Central Florida. Her clinical work in her master's program focused on antenatal and postnatal maternal mental health and integrating mental health services into community health clinics.

Michele KarlMichele Karl

Member, PKD Foundation Board of Trustees
PKD Parents Chapter Co-coordinator

Michele Karl lives in New York with her husband, three children and two dogs. She has been the co-coordinator of the PKD Foundation PKD Parents Chapter for over five years, and has walked in seven Walk for PKD events. She works hard to advocate for her three boys, two of whom have ARPKD. When she is not with her family, Michele works as a teacher to babies who are blind and visually impaired. She also enjoys reading, biking and spending time with her whole family.

Margot Troutt Keys, LCSWMargot Troutt Keys, LCSW

Margot Troutt Keys has been a licensed clinical social worker since 1998. She earned her clinical social work master's degree from Bryn Mawr College's Graduate School for Social Work and Social Research. After having worked in schools, behavioral health care agencies and hospitals for a number of years, she opened her private practice in 2003. Margot works from a largely psychodynamic and cognitive behavioral therapy orientation and a contextual family therapy approach. She sees clients as people with problems rather than a diagnosis to be pathologized. Margot is passionate about how polycystic kidney disease (PKD) affects peoples' emotional and physical lives. Having been diagnosed with PKD when she was 26 years old and having passed it on to her daughter, Lena (17), she is committed to assisting others to cope with the emotional ramifications of the illness. She seeks to do this with warmth, directness, and good humor.

David K. Klassen, M.D.David K. Klassen, M.D.

United Network for Organ Sharing

David Klassen, M.D., joined the United Network for Organ Sharing (UNOS) in 2014 as Medical Officer. In this role, Dr. Klassen provides an experienced clinical perspective to policy making and patient safety efforts. Dr. Klassen was the Medical Director of the Kidney and Pancreas Transplant Programs at the University of Maryland Hospital, where he was as a faculty member from 1986 to 2014. He has a long history of volunteer leadership with UNOS and many professional societies such as the American Society of Transplantation and the American Society of Nephrology. Dr. Klassen served on the OPTN/UNOS Board of Directors and as a member of the OPTN/UNOS Kidney Transplantation and Membership and Professional Standards committees. Dr. Klassen earned his medical degree from the Ohio State University and completed his internal medicine and nephrology training at the Johns Hopkins Hospital in Baltimore. He has authored over 100 scientific papers and 15 book chapters.

Timothy Kline, Ph.D.Timothy Kline, Ph.D.

Mayo Clinic

Timothy L. Kline, Ph.D., received Bachelor of Science degrees in both Physics and Art from the University of Wisconsin in 2006. He received his Master of Science degree in Electrical Engineering in 2009 from the University of Minnesota with research focused on developing magnetic nanoparticles for magnetic hyperthermia applications. He then pursued medical imaging and image processing research and received his PhD degree in Biomedical informatics and Computational Biology with a minor in Electrical Engineering in 2013 from the University of Minnesota. His postdoctoral training has been within the Mayo Translational Polycystic Kidney Disease Center at Mayo Clicnic in Rochester, Minn.

Kriste LewisKriste Lewis

NFL New Orleans Saints

Kriste Lewis is a 42-year-old NFL Cheerleader for the New Orleans Saints. She resides in Hattiesburg, Miss. with her husband of 18 years and their two boys. She holds a degree in Early Childhood Development and Elementary Education from the University of West Alabama. Kriste taught Reading for several years in the public school system where she also coached cheer and dance. She is currently a group fitness instructor and believes strongly in the importance of a healthy lifestyle. Kriste was diagnosed with polycystic kidney disease 15 years ago during a routine pregnancy ultrasound. The diagnosis came as no surprise since her mother had also been diagnosed several years earlier. It wasn't until Kriste witnessed her mother's struggle with dialysis, and eventually a kidney transplant, that she decided to fight the disease head on and not let PKD beat her.

Michal Mrug, M.D.Greg Mainolfi

St. Mary's College of Maryland

Gregory Mainolfi is from Towson, Maryland and is currently enrolled at St. Mary's College of Maryland. Greg was diagnosed with PKD in utero and has shared the disease with his mother since birth. He and his parents have become heavily involved with the PKD Foundation in the past few years.

Greg is a Biology major that runs cross country and plays tennis at St Mary's. He is also involved in many clubs and organizes many events on his campus.

Michal Mrug, M.D.Michal Mrug, M.D.

University of Alabama at Birmingham

Michal Mrug, M.D., is an Associate Professor of Medicine in the Department of Medicine/Division of Nephrology at the University of Alabama at Birmingham. He is also a member of the PKD Foundation Scientific Advisory Committee. Dr. Mrug's clinical interests center on the evaluation and management of adult patients with ADPKD. His current research focuses on the identification of specific genes and molecular pathways that modulate PKD severity and progression. He collaborates with Lisa M. Guay-Woodford. M.D., Director, Center for Translational Science Institute at Chidren's National, to identify non-PKD genes that contribute to phenotypic variability in PKD.

Tanmoy Mukherjee, M.D.Tanmoy Mukherjee, M.D.

Reproductive Medicine Associates of New York

Tanmoy Mukherjee, M.D., is a board-certified gynecologist and reproductive endocrinologist. Dr. Mukherjee is Associate Director of the Mount Sinai Division of Reproductive Endocrinology and Co-director of Reproductive Medicine Associates of New York. He completed his residency at the Albert Einstein College of Medicine, where he received the Leo M. Davidoff Society Award as well as the Schulman Award. He then completed his fellowship at Mount Sinai Hospital. The author of numerous journal articles and textbook chapters, Dr. Mukherjee is also the recipient of the prestigious Society of Reproductive Surgeons Award for his extensive research in ovum donation and medical therapy for the treatment of infertility. In addition to his expertise in in-vitro fertilization, egg donation and other assisted reproductive techniques, Dr. Mukherjee excels in a wide array of medical and surgical treatments for the management of endometriosis, uterine abnormalities, abnormal uterine bleeding and abnormalities of the fallopian tubes.

Harvey Mysel

Living Kidney Donors Network

Harvey is a two-time kidney transplant recipient. After 20 years of proactively managing his polycystic kidney disease, Harvey had his first kidney transplant in February 2007. He was fortunate that his wife Amy was a compatible donor.

Harvey developed a rare virus and in 2012 needed another kidney transplant. This transplant was also from a living donor. Harvey was introduced to Stephen from a mutual acquaintance. Harvey and Stephen were involved in a 3-way paired exchange in August of 2012.

Harvey started the Living Kidney Donors Network (LKDN) in 2007 and received nonprofit 501(c) 3 organization status. LKDN's mission is to help those in need of a kidney transplant be fully informed about their transplant options and become successful at finding a living kidney donor. LKDN has a very active Facebook page with over 11,000 followers and has helped hundreds of recipients and donors in the transplant process.

Harvey has facilitated workshops for many PKD Foundation Chapters, and presented living donor information at previous PKD Foundation National Conventions.

Charles J. Newman, CLUCharles J. Newman, CLU

The Charles J. Newman Co., LLC

Charles J. (Chuck) Newman CLU, Principal of The Charles J. Newman Co., LLC is a licensed insurance agent and registered representative maintaining agent and brokerage relationships with more than four dozen insurance and investment companies. He provides a full range of group health insurance and employee benefit programs to over 200 group clients as well as individual Life, Disability and Long Term Care insurance plans to more than 2,000 individual clients.

A 1983 graduate of Colgate University, Chuck Newman entered the insurance business in 1992, and earned the title of Chartered Life Underwriter (CLU) from the American College in Bryn Mawr, Pa. in 2002. He is a member of the National Association of Insurance and Financial Advisors, the National Association of Health Underwriters and the Society of Financial Service Professionals.

Stephen Parnell, Ph.D.Stephen Parnell, Ph.D.

Kidney Institute-University of Kansas Medical Center

Stephen Parnell, Ph.D., is a research assistant professor at the Kidney Institute at the University of Kansas Medical Center (KUMC), where he received his Ph.D. in biochemistry and molecular biology. He received a fellowship from the Polycystic Kidney Disease Foundation in 2006, and was recently awarded a research grant funded by the Foundation. His current project is focused on studying the protein polycystin-1, to learn more about its function and why renal cysts form when you lose it. Through this study he hopes to identify how to reverse cyst growth. Dr. Parnell has multiple family members who have PKD, including his father, underlying his strong interest in studying the disease. His undergraduate degree in biology is from the University of Iowa. In addition to his PKD Foundation fellowship conducted at KUMC from 2006-08, Stephen Parnell was a postdoctoral fellow at the University of North Carolina in the Department of Biochemistry and Biophysics, 2001-06.

Vishal Patel, M.D.Vishal Patel, M.D.

University of Texas Southwestern Medical Center

Vishal Patel, M.D., is an Assistant Professor of Medicine at the University of Texas Southwestern Medical Center in Dallas, Texas. He obtained his medical degree in India, and then completed his internal medicine residency training at the McGraw Medical Center of Northwestern University in Chicago, and a clinical nephrology fellowship and a basic science fellowship sponsored by the National Institutes of Health at the University of Texas Southwestern Medical Center. Dr. Patel has received numerous awards for academic achievement during medical school and a career development award from the NIH. He was also named a "rising star" in Nephrology by Texas Monthly magazine.

Dr. Patel runs a pre‐clinical polycystic kidney disease research laboratory at UT Southwestern. His research is focused on understanding the role of microRNAs in PKD progression and developing microRNA‐based drugs for PKD. His laboratory is funded by grants from the NIH and the PKD foundation. In addition to research, Dr. Patel also sees patients at Parkland Hospital in Dallas. He is planning to launch a new multidisciplinary clinic in the coming months with the goal of providing comprehensive clinical care for PKD patients at UT Southwestern.

Jacqueline Peda, Ph.D.Jacqueline Peda, Ph.D.

University of Kansas Medical Center

Jacqueline Peda, Ph.D., earned her bachelor's degree in biology at Washburn University, and an M.S. and Ph.D. degrees in pathology at the University of Kansas Medical Center. She is pursuing post-doctoral training under the mentorship of Dr. Xiaogang Li at the University of Kansas Medical Center.

Ron Perrone, M.D.Ron Perrone, M.D.

Tufts Medical Center
Member, PKD Foundation Scientific Advisory Committee

Ronald D. Perrone, M.D., is the Scientific Director of the Clinical and Translational Research Center, the Associate Chief of the Division of Nephrology and the Medical Director of Kidney Transplantation at Tufts Medical Center. He is also a professor at Tufts University School of Medicine. Dr. Perrone is Board certified in nephrology and internal medicine. He has received numerous honors and awards, including the title of "Top Doctor" from the Boston Magazine for several years and the Physician of the Year Award from the Polycystic Kidney Disease Foundation. He is a member of the PKD Foundation Scientific Advisory Committee and a Region 1 Representative at the OPTN/UNOS Kidney Transplant Committee. Dr. Perrone is also on the Editorial Board of the Clinical Journal of the American Society of Nephrology.

Dr. Perrone has a long‐standing and wide‐ranging interest in autosomal dominant polycystic kidney disease (ADPKD), including basic investigations addressing mechanisms of ion transport by cystic epithelia, clinical investigations describing causes of mortality in ADPKD end‐stage renal disease population, and participation and direction of clinical trials in ADPKD.

Anjay Rastogi, M.D., Ph.D.Anjay Rastogi, M.D., Ph.D.

University of California, Los Angeles

Anjay Rastogi, M.D., Ph.D., is the Director of the University of California, Los Angeles (UCLA) Dialysis Program. He oversees the clinical operations of the dialysis unit including many clinical studies. He is heavily involved in clinical research encompassing kidney disease, hypertension, dialysis, polycystic kidney disease and living kidney donation. Dr. Rastogi finished his internal medicine residency and nephrology fellowship at the David Geffen School of Medicine at UCLA. He has a doctoral degree in pharmacology, which he completed under the mentorship of Nobel Laureate Louis Ignarro also at UCLA. His dissertation was on the role of nitric various factors modulating high output nitric oxide production.

Julia RobertsJulia Roberts

Member, PKD Foundation Board of Trustees
PKD Parents Chapter Co-coordinator

Julia Roberts is raising two teenagers to be their own advocates as they navigate the medical and educational community. She also owns an advertising agency, is a writer, an advocate and community builder.

In 2010 she co-founded SupportforSpecialNeeds.com, a site for parents and professionals about kids with special needs. She's worked with clients for nearly 20 years at her marketing firm, the Roberts Resource. She's married to Julian and lives in Atlanta, Georgia.

She's an activist for kids with disabilities, organ donation, suicide prevention and removing the stigma against mental illness. She been involved with the PKD Foundation since 2002 and currently serves as Chair of the PKD Foundation's Board of Trustees Governance Committee. She also serves on the Parent Advisory Council of Children's Health of Atlanta. She speaks frequently on the topic of raising kids with special needs to parents and healthcare professionals.

Shuvo Roy, Ph.D.Shuvo Roy, Ph.D.

University of California, San Francisco

Shuvo Roy, Ph.D., is a professor in the Department of Bioengineering and Therapeutic Sciences (BTS), a joint department of the University of California, San Francisco Schools of Pharmacy and Medicine. His work includes development of medical devices to address unmet clinical needs through strong collaboration and a multidisciplinary approach. Dr. Roy is also a faculty affiliate of the California Institute for Quantitative Biosciences (QB3) and the Director of the Biodesign Laboratory located on the Mission Bay campus. In addition, he serves as the Technical Director of The Kidney Project and is a founding member of the UCSF Pediatric Device Consortium. Dr. Roy has developed and currently teaches a course on medical devices, diagnostics and therapeutics, and regularly lectures on the medical device design process to UCSF graduate students and to national and international academic and industry audiences. He is the author of more than 100 publications and co-author of three book chapters, holds multiple patents for device developments and is the recipient of many award titles and nominations.

Suzanne RuffSuzanne Ruff

Author of The Reluctant Donor

Suzanne Ruff is a freelance writer for the Charlotte Observer. She is the author of the award-winning nonfiction book, The Reluctant Donor. Her book was a Finalist in the MIPA Book Awards and received the 2015 Illumination book award. She has also been published in Chicken Soup for the Soul books and various other newspapers and magazines.

Suzanne is an advocate and professional speaker regarding progress made toward the treatment of kidney disease, transplantation and organ donation. She serves on the National Kidney Foundation's Living Donor Council Executive Committee, is a Board Director with AAKP (American Association of Kidney Patients) and a volunteer for the Polycystic Kidney Foundation. Her 92-year-old father's claim to fame is that he helped secure the first federal funding for polycystic kidney disease research.

This past January Suzanne became a co-investigator on a Patient-Center Outcomes Research Institute (PCORI) research study granted to Duke Medical School called Prepare Now "Putting Patients at the Center of Kidney Care Transitions."

Jeffrey M. Saland, M.D.Jeffrey M. Saland, M.D.

Mount Sinai Hospital

Jeffrey M. Saland, M.D., is an Associate Professor of Pediatrics and Chief of the Division of Pediatric Nephrology and Hypertension at the Mount Sinai School of Medicine in New York City. He received his M.D. from the University of New Mexico in Albuquerque, pediatric training at the Children's National Medical Center in Washington, D.C., and fellowship training in pediatric nephrology from the University of Texas Southwestern Medical Center in Dallas and at Mount Sinai.

Dr. Saland's activities include patient care, research and educational responsibilities as Director of the Pediatric Nephrology Fellowship Program at Mount Sinai Hospital. Dr. Saland has been involved with the Foundation since 2006, including planning and speaking at the 2013 conference: PKD/CHF & other cystic diseases: from diagnosis to daily living in New York.

Irfana Soomro, MBBSIrfana Soomro, MBBS

New York University Langone Medical Center

Dr. Soomro earned her MBBS (bachelor of medicine/surgery) at Dow Medical College – Karachi, Pakistan. She is a clinical instructor in the division of nephrology at New York University Langone Medical Center, Bellevue Hospital Medical Center. Her research is under the mentorship of Edward Skolnik, M.D., director of the Division of Nephrology.

Ted Steinman, M.D.Ted Steinman, M.D.

Beth Israel Deaconess Medical Center
Brigham and Women's Hospital

Ted Steinman, M.D., is a nephrologist at Beth Israel Deaconess Medical Center and the Brigham and Women's Hospital in Boston where he is a senior physician. He also is a Clinical Professor of Medicine at Harvard Medical School. In addition to his many contributions as a clinician and researcher, Dr. Steinman has held many important positions, including Past Chair of the PKD Foundation Scientific Advisory Committee, Past President of the National Kidney Foundation Region I, and Past President and Past Chairman of the National Kidney Foundation of Massachusetts and Rhode Island. Dr. Steinman served as a Principal Investigator for both the National Institutes of Health HALT PKD study and the Otsuka Tolvaptan study. He has been the author or co-author of 128 peer-reviewed publications, 12 book chapters, 187 Proceedings and 86 abstracts.

Blaire Taylor, LMHCBlaire Taylor, LMHC

Children's Home Society of Florida

Blaire Taylor, LMHC, is a Licensed Mental Health Counselor in the State of Florida. Blaire has over 8 years of clinical work experience with at‐risk children and families. Blaire is currently a licensed clinical supervisor at the Children's Home Society in Jacksonville, Florida where she supervises 11 employees in the Comprehensive Adoptions Services and the Foster Care Licensing Program. She received her Bachelor's degree in History from William Jewell College and her Master's degree in Mental Health Counseling from Webster University. Blaire has experience working with different populations such as: substance abuse, the juvenile justice system, the foster care system, and with adult and child in outpatient therapy. Blaire has extensive training in Infant Mental Health, Child‐Parent Psychotherapy, Trauma‐Focused Cognitive Behavioral therapy and Cognitive Behavioral therapy.

Jacob Taylor, Ph.D., R.D.Jacob Taylor, Ph.D., R.D.

University Medical Center Groningen
University of Groningen

Jacob Taylor, Ph.D., R.D., got involved in polycystic kidney disease (PKD) research during his Ph.D. training while under mentorship of emeritus professor, PKD Foundation co-founder and renowned PKD researcher, Jared Grantham, M.D. Since then he relocated to Groningen, the Netherlands, to complete his post-doctoral fellowship training at the University Medical Center Groningen under another renowned PKD researcher, Ron Gansevoort, M.D., Ph.D. Dr. Taylor's research focuses on understanding how dietary factors may harm kidney function. In PKD, this focus is on understanding and altering dietary and lifestyle behaviors that may slow the growth of cysts. Most notably, Dr. Taylor developed and implemented the Kansas PKD diet in a clinical pilot study, and was the first ever recipient of the Nutrition Translational Science Research Award, awarded by the American Society of Nutrition, for this work.

Dr. Taylor has also worked clinically as a pediatric nephrology dietitian at Children's Mercy Hospital in Kansas City, where he worked with children who have chronic kidney disease, kidney failure/dialysis and kidney transplants.

Karen Thurman, CongresswomanKaren Thurman, Congresswoman

TG and C Group Consulting

Congresswoman Karen Thurman served in the United States House of Representatives from 1993 to 2003, representing Florida's Fifth Congressional District. During her time in Congress, she became a member of the influential Ways and Means Committee, which maintains jurisdiction and oversight of the Medicare and Medicaid program. Her moderate, bipartisan record made her a national leader on health care policy. She also served as a member of the Committees on Agriculture and Government Reform and Oversight.

Prior to being elected to Congress in 1992, Thurman served in the Florida State Senate for 10 years. She also served as member of the City Council and mayor of Dunnellon, Florida. Before embarking on her career in elected office, Congresswoman Thurman taught elementary school mathematics in Marion County, Fla. Congresswoman Thurman is the principal partner at the TG and C Group Consulting in Washington, DC. She obtained her associate's degree from Santa Fe Community College and her bachelor's degree in education from the University of Florida. She resides with her family in Dunnellon, Fla.

Terry Watnick, M.D.Terry Watnick, M.D.

The University of Maryland
Chair, PKD Foundation Scientific Advisory Committee

Terry Watnick, M.D. is an Associate Professor of Medicine in the Division of Nephrology at the University of Maryland, where she has established an inherited renal disease clinic. Dr. Watnick has been an investigator in several multicenter clinical trials for patients with autosomal dominant polycystic kidney disease (ADPKD), including TEMPO. She also leads the Baltimore Polycystic Kidney Disease Research and Clinical Core Center at the University of Maryland School of Medicine, and currently serves as the Scientific Advisory Committee Chair for the PKD Foundation's Board of Trustees. Dr. Watnick received her medical degree from the Yale School of Medicine and completed her internal medicine training at Yale New Haven Hospital. She received clinical training in nephrology at the Johns Hopkins Hospital, where she also completed a research fellowship that was focused on the genetics of ADPKD. Dr. Watnick subsequently joined the faculty at the Johns Hopkins School of Medicine, where she rose through the ranks to Associate Professor.

Dinner menu

  • Fresh Bibb lettuce with roasted corn, tomatoes and cucumbers served with serrano vinaigrette
  • Grilled chicken Veracruz
  • Spanish rice with pigeon peas
  • Roasted cumin zucchini and squash
  • Cornbread muffins and medianoche rolls
  • Strawberry tres leches

Please note that menu items are subject to change.

Lunch buffet menu

  • Vegetarian Italian white bean soup
  • Hearts of romaine, parmesan cheese, seasoned croutons and classic Caesar dressing
  • Bocconcini, tomato and basil salad
  • Baked seasonal fish with limoncello and herb sauce
  • Grilled boneless chicken Marsala with roasted mushrooms
  • Penne rigate with smoked tomato sauce
  • Ratatouille
  • Focaccia bread with pesto
  • Fresh-cut seasonal fruit
  • Tiramisù

Please note that menu items are subject to change.

Brunch menu

  • Croissants with strawberry preserves and butter
  • Yogurt and fruit parfait
  • Scrambled eggs with chives and cheese
  • Chicken and blueberry sausage
  • Lyonnaise potatoes
  • Orange juice
  • Coffee (regular and decaf)
  • Selection of hot teas

Please note that menu items are subject to change.