News and Information
PKD Foundation News and Announcements
PKD Patient Handbook
The newly updated PKD handbook is now available! The revised handbook has undergone extensive reviews and updating by PKD experts. Topics include PKD signs and symptoms, diet and nutrition, kidney failure, transplantation and more.
Download your digital copy today!
A note from your Chapter Coordinator:
Let’s make 2015 a great year for the Charlotte Chapter and let’s be there for each other as we fight this disease. From time to time we will send out a S.O.S. asking for your help on PKD topics. Please let us know if you can help!
We’ve recently added several new members to the Chapter. Each individual is in a different stage of their journey with PKD. Many have mentioned that they want to get involved in helping our Chapter grow, as well as helping the Foundation’s mission. New members and current members are encouraged to email us to suggest topics for discussions, awareness events and/or other items of interest. We need to share our DIY projects and success stories. Don’t be shy! Our goal is the same – fighting for the PKD community!
SAVE THE DATE: WALK FOR PKD. November 7, 2015, Park Road Park, Charlotte. Walk Coordinator, Bob August, has hit the grounding…walking (pun intended). He is looking for volunteers to help in securing sponsors, food, beverages and more. Contact Bob at email@example.com to offer your assistance. Please know YOU are in control of the time you commit to helping make this Walk a success.
Calling all marathoners! Please contact your Chapter Coordinator, JoAnn Villanueva, at firstname.lastname@example.org to discuss how to secure your spot in the half-marathons taking place throughout the U.S.A. This is a great fundraiser and the PKD Foundation is here to help!
Local Events and Meetings
Join us for our Chapter Meet & Greets. We will meet at Waterbean Coffee, 9705 Sam Furr Road, Suite A, Huntersville, NC 28078. Our chapter has many new members who want to connect with other PKD patients and PKD family members. Several of you have stated you want to “get more involved” with the Chapter. Current members are encouraged to join us as we move forward in building a strong Chapter. Everyone is encouraged to stop in, have a cup of coffee (decaf, of course), tea and/or a morning treat and share your thoughts, concerns and ideas.
Other Meet & Greet events will take place throughout the Charlotte area in the coming months. We encourage everyone to attend our first Meet & Greet to lay the ground work for the future. If you are unable to attend and you wish to share a thought, concern or idea, please feel free to send an email to the email@example.com
If you have questions about the event please email our Vounteer Chapter Coordinator, JoAnn at firstname.lastname@example.org.
Charlotte Walk for PKD
November 7, 2015
Park Road Park
Registration is now open!
To learn more about the Charlotte walk or to donate, click here.
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Next Webinar Wednesday
What are cilia and why do they matter?
PKD Foundation Chief Scientific Officer, David Baron, Ph.D., will discuss what cilia are and why they matter. He will also take time at the end of his presentation to answer your questions.
Latest National Webinar
Pain and PKD
Chronic pain is a major factor affecting the quality of life of a PKD patient and one that is difficult to manage. Dr. Theodore Steinman has spent years working with PKD patients to help them manage their pain and get back to life. In this webinar, Dr. Steinman covers the latest in PKD pain treatment and how to manage daily pain at the various stages of PKD.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.