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PKD National Convention: We’re Better Together

I want to end PKD forThe banners are down, boxes packed, and I’m feeling the satisfaction and relief of a successful PKD National Convention. As I reflect on the long days of planning, the thousands of emails sent, and the nights and weekends put in, I am so honored, so grateful to be the person who gets to bring this community together. For every single person touched by PKD – those who came to the Convention, those who wished they could have, and those who are just finding out they should come – this is for you. Bringing this community of amazing, strong, passionate, dedicated, supportive advocates together shows me that all the work put in, and all the work yet to come, is nothing compared to what you do every single day as you fight this disease. You deserved this weekend to be with others just like you.

Last session         Teen session

In the short time I’ve been with the Foundation (2 ½ years), I have heard the term “PKD Family” a lot. This Convention truly does represent that term – your family is not just who you share blood with. It also extends to the group of people who understand you, support you, and hold you up. The entire weekend felt so much like a family reunion – from the doctors and researchers to the attendees and staff, this weekend was about so much more than learning about your disease. It was about connecting, making new friends, seeing old friends, and remembering that you are part of a wider network of people who have your back.

Of course, there is a long list of people to thank – PKD Foundation Board of Trustees for making the Convention a priority, staff for helping pull it off, speakers and researchers who donated their time to educate us (special shout-out to Terry Watnick for the hours she spent working with me to set the agenda and secure speakers!), our amazing Chapter volunteers who jumped in to help where we needed it, the sponsors for providing the financial support to make it feasible, exhibitors, amazing staff at Disney and so many more. It truly took every single person being dedicated and committed to their role. What an honor to work with all of them to serve you. I truly appreciate the opportunity to serve this community – thank you.


Alexis Denny
Research and Education Manager

The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart. –Helen Keller


  1. Yvonne DiCarlo-Clemens says:

    A great big heartfelt thank YOU, Alexis, and the entire PKD staff for making the conference such a stimulating, educational experience. Your hard work greatly appreciated. And you are right, it is truly a reunion of family, united together to help each other and generations ahead. I returned home with a renewed commitment to EndPKD. Thank you.

    1. Alexis Denny says:

      Thank you for your kind words Yvonne!! It was so wonderful to see you there!!

  2. Thanks so much Alexis! The Convention was amazing, and really illustrated that we are better together! Already looking forward to future conventions!

    1. Alexis Denny says:

      Liz you are such a gem!! Thanks for all your help throughout the weekend!!

  3. Chris says:

    Thank for writing this Alexis. I did not attend the convention but really wish I did. It sounds like a great experience and exactly what I need right now. I only recently learned about the convention and it was too late for me to make arrangements to travel there this year. It is really easy to feel alone with this disease – especially when much of your family is gone because of it. I really hope they have a convention next year so I can be a part of it.

    1. Alexis Denny says:

      Chris – thank you for this note. You are so right – PKD can leave you feeling isolated and like no one understands. We don’t have the next event figured out yet, but stay tuned to our website and emails to get the latest info. In the meantime, check to see if you have a Chapter in your area as they offer great opportunities for support and education. Find info here or email us at Best wishes and hope to see you at the next Convention!

  4. Catherine L Blakley says:

    Thank you PKD Foundation for all that you do including the wonderful 2016 convention. Not too long before the 2014 convention, I had started the process toward a pre-emptive transplant, so the 2014 convention provided me with so much information regarding a transplant and my life afterwards. Thanks to my sister June, who so generously gave me one of her kidneys, I had my transplant on February 16, 2015. So I was hoping to learn even more at this year’s convention. I have to say, that the convention exceeded my hopes and expectations. As always it’s wonderful to meet and visit with others with PKD who have gone through or who are going through the same experiences I am. But what was so truly amazing this year was the research that is going on. It’s beyond exciting. I was able to visit at length with one of the 2016 Grant recipients and two of the Research Fellows. It feels me with so much hope. I know that in my lifetime, there are going to be several treatments available and very possibly a cure.

    1. Alexis Denny says:

      Catherine – I’m so glad you were able to connect with some of our researchers and fellows! They are truly the best in the world (I’m not biased at all, of course :-). I know they all had a wonderful time connecting with patients and families – so many of them let me know what a great experience it was. Thank you!!

  5. Jean Shih says:

    Is there any discussion on successful treatment which slows down the cyst progression in Adult PKD patients? May I have the information.
    Thank you very much

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