News and Information
A Message From Your Chapter Coordinator
New Jersey Chapter Members:
My name is Alexandra "Alex" Coglianese, and I am honored, and most importantly, EXCITED, to have the opportunity to serve as the new Chapter Coordinator for the New Jersey Chapter of the PKD Foundation. Continue reading Alex's welcome letter
Last week, the United Network for Organ Sharing (UNOS) and the Organ Procurement and Transplantation Network (OPTN) implemented a new Kidney Allocation System (KAS) for allocating deceased donor kidneys to those on the transplant waiting list.
We understand that many in the PKD community have questions about the system and how it will affect PKD patients. We encourage you to join us on Wednesday, Dec. 17 for a special Q&A webinar. Dr. Clifford Miles, UNOS Kidney Transplantation Committee Region 8 representative, will be joining us to answer your questions.
Have a specific question you'd like Dr. Miles to address? To submit a question, please sent it to email@example.com with the subject line "KAS Webinar." There will also be an opportunity to submit questions during the webinar.
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 the New York City 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 Jersey 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 Coordinators, Alex, at firstname.lastname@example.org.
The New Jersey Chapter does not have any meetings scheduled at this time but we do want to hear from you. If you have questions or would like to connect with our Volunteer Chapter Coordinator, please email us at email@example.com.
New Jersey Walk for PKD
The New Jersey 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.