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.
Shop with AmazonSmile this holiday season to benefit the PKD Foundation. When you shop at AmazonSmile, Amazon will donate 0.5% of the purchase price to the PKD Foundation. Learn more and start your shopping at smile.amazon.com.
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 you for joining us at our Walk for PKD. We had a very successful day and appreciate all of those that donated or came out to the walk. Registration for the event is now closed, but donations are still being accepted through December 31.
Latest Free Webinar
Presented by Ronald D. Perrone, M.D., HALT study principal investigator
This webinar shared the results of the HALT-PKD clinical trials, which were announced on Nov. 15, 2014, at the American Nephrology (ASN) Kidney Week meeting. This was the first prospective, randomized clinical interventional study for adults with autosomal dominant polycystic kidney disease (ADPKD). These studies are important to the PKD community because neither the optimal blood pressure target levels, nor the best medications for control of blood pressure in ADPKD, were known when the study was started in 2006 (the study was completed in June 2014). Currently, the complications of hypertension, including stroke and heart attack, affect many more individuals with ADPKD than ADPKD-specific complications such as liver cysts or brain aneurysms.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.