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 Foundation News and Announcements
We are excited to announce our new Chief Scientific Officer (CSO), who will be joining the PKD Foundation on Feb. 9. David Baron, Ph.D., will be leading the Foundation's work in research toward finding treatments and a cure. Baron's background in biomedical sciences and drug development will keep us moving forward with progress in research.
United Airlines NYC Half Marathon
Sunday, March 15, 2015
Stop traffic in Times Square for PKD at this year’s United Airlines NYC Half! Your 13.1 mile running tour of the Big Apple will help bring hope to those with PKD. Click here for more information.
Questions? Contact us at email@example.com or 816.268.8469.
Local Events and Meetings
Education Seminar - Managing Your Life with PKD
Thank you to the following speakers for joining us at our Education Seminar!
Irina Barash, MD
Jennifer Egert, PhD
Dennis Finkielstein, MD
Kim Valenza, RE, CDE, CDN
Ariella Tomback, LMSW
Chapter support 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 the New York City Chapter does not have any meetings planned at this time, we would still love to hear from you! If you have any questions concerning support meetings, please email our Volunteer Chapter Coordinator, Sarah, at firstname.lastname@example.org.
New York City Walk for PKD
The New York City Chapter wants to thank everyone for participating and fundraising for the 2014 Walk for PKD. We had a very successful day and appreciate all of the support. We look forward to seeing you this fall at the 2015 New York City Walk for PKD!
Latest Free Webinar
Presented by Clifford Miles, M.D., UNOS Kidney Transplantation Committee Region 8 Representative; Assistant Professor of Internal Medicine; Transplant Nephrologist, University of Nebraska Medical Center
On Dec. 4, 2014, the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) implemented a new system for allocating deceased donor kidneys to those on the transplant waiting list. Questions have come in asking how the new Kidney Allocation System (KAS) will affect PKD patients. Join us for a conversation with Dr. Clifford Miles, UNOS Kidney Transplantation Committee Region 8 representative, where he answers your questions, both pre-submitted and submitted in real time, during the webinar.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.