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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 Long Island 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, Gillian, at firstname.lastname@example.org.
We do not currently have any meetings scheduled however, we do want to hear from you. Please email us at LongIslandChapter@pkdcure.org. Check back for updates!
At our meetings, you will find a great group of caring, supportive people who all have been touched by PKD in some way and who are willing to share their knowledge of the disease. We also host guest speakers and leaders in the field of PKD that help us continue our ongoing educational awareness program.
In order to best meet the needs of our members who hail from Suffolk, Nassau and Queens, we alternate where our meetings are held between an eastern and western location.
Waldbaum's Dialysis Center
100 Community Drive
Great Neck, NY
Meetings held in Nassau County are in the 2nd floor conference room of the Waldbaum's Dialysis Center. It is located just north of North Shore Hospital off Community Drive. (The address is 100 Community Drive, Great Neck, NY).
Take the Long Island Expressway to the Lakeville Road/Community Drive exit. Turn onto Community Drive, proceed north past the hospital to the Lake Success Business Park. It will be on your left about 1/4 mile past the hospital. Turn left into the Business Park and proceed up the hill. The Dialysis Center will be right in front of you - park where there is an open space.
The Sachem Public Library
150 Holbrook Road
The Sachem Public Library is located at 150 Holbrook Road in Holbrook, New York. The library building is approximately half way between the Long Island Expressway and Portion Road on the west side of Holbrook Road across from the Nokomis Elementary School.
Getting to the library from the L.I.E. west of exit 61: Take Exit 61 off the Expresway and take a left (to go north) on Holbrook Road at the second traffic light on the Service Road. The library is appoximately 1/2 mile north of the L.I.E. on the left side of Holbrook Road across from the Nokomis Elementary School.
Getting to the library from the L.I.E. east of exit 62: Take Exit 62 off the Expressway and stay on the service road until the first traffic light after you pass the Symbol Technologies building. Take a right on Holbrook Road (to go north) at the traffic light. The library is approximately 1/2 mile north of the L.I.E. on the left side of Holbrook Road across from the Norkomis Elementary School.
Long Island Walk for PKD
The Long Island 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.