News and Information
Thank you for joining us at the New York City Walk for PKD!
The Walk may be over but fundraising will remain open until Dec. 31. Click the button below to make a donation to the New York City Walk today!
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 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.
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!
Chapter Education Seminar
Sunday, Dec. 6
10:00 a.m. to 2:30 p.m.
Living with PKD Patient Workshop
PKD Clinical trials update
Irina Barash, MD, MS - Director: Mount Sinai Beth Israel PKD Program
Living with PKD and on dialysis
Pasquale Viscusi, Esq. - Sr. Dir. of Pari-Mutuel & Simulcasting
Navigating dialysis and transplant
Ariella Tomback, LMSW - Transplant Liason, Transplantation Institute of Mount Sinai Hospital
Mount Sinai Phillips Ambulatory Care Center
10 Union Square East
Friedman Conference Center, 2nd Fl.
New York, NY 10003
Cost: $8 registration fee which includes lunch.
If you have any questions concerning Chapter meetings, please email our Volunteer Chapter Coordinator Sarah at firstname.lastname@example.org.
New York City Walk for PKD
Thank you to all who joined us for the New York City Walk for PKD!
Sign Up to Receive Information From Your Chapter
Next Webinar Wednesday
Wednesday, Nov. 18, 12 - 1 p.m. CDT
PKD Foundation Chief Scientific Officer David Baron, Ph.D., will explain the genetics of ADPKD and ARPKD. He will include a overview of some of the genetic research currently being conducted.
Next Free National Webinar
Wednesday, Dec. 2, 2015, 7 to 8 p.m. CST
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. Also included will be a discussion of clinical trials – why they are important and how to find out about them.
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.