News and Information
A Message From Your Chapter Coordinator
Hello everyone and welcome to the NYC Chapter webpage. My name is Sarah Giller and I’m so excited to have this opportunity to be the new Chapter Coordinator.
I didn’t have a clue about PKD when I was diagnosed about 20 years ago. It was quite a shock to everyone in my family. The disease progressed rapidly until the only options were either dialysis or a transplant. I have an extraordinarily wonderful and generous sister and she donated a kidney to me in 2007. It was truly a gift of life.
I turned to the PKD Foundation soon after my diagnosis mostly for information and to understand exactly what PKD is and how it would affect both me and my family. Then it became my support system. I met people and learned about what having a chronic disease was like and how I could live a full life in spite of it.
That’s what I hope this Chapter will continue to be – a place of information and support, a place where we help each other and our families to cope with PKD and where we work together towards what we all want – a cure for PKD.
However you want to participate and whatever the level of your involvement we welcome you to join us towards this goal.
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!
Local Events and Meetings
Chapter meetings are another opportunity for you to have your questions and concerns about PKD addressed. We will do our best to provide you with answers or direct you to someone that can assist you. Everyone is welcome!
Although we don't have any meetings scheduled at this time we would still like to hear from you. If you have any questions about our Chapter, please contact Sarah at email@example.com.
New York City Walk for PKD
Thank you to all who joined us for the 2015 New York City Walk for PKD!
We had a great time connecting with everyone. Check out some of our favorite memories from the Walk here.
Save the date!
Oct. 23, 2016
Hudson River Park, Pier 84
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Latest Webinar Wednesday
Total Kidney Volume (TKV) is a key biomarker for PKD clinical studies. Learn exactly what it means, how it is calculated and why it is an important tool for the development of new therapies for the treatment of PKD.
Learn more about Webinar Wednesdays or watch previous webinars here.
Latest National Webinar
Presented by: David Baron, Ph.D., PKD Foundation CSO
Why does a drug therapy take so long to find? Hear from PKD Foundation Chief Scientific Officer David Baron, Ph.D. as he uses his decades of experience in drug development to explain the process as it relates to PKD.
Watch previous webinars here.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.