Long Island Chapter

Participate in Our Chapter.

Did you know our chapter covers all of Suffolk County, Nassau County and Queens? We are now known as the Long Island Chapter. Please bear with us as we change our name. Our e-mail address is now longislandchapter@pkdcure.org. We invite you to come meet us and join the fun! Please e-mail us if you wish to be included on our local chapter e-mail list aned we'll see to it that you receive all the necessary details and meeting minutes so you are best informed. In the event that you would like to be removed from future PKD Foundation e-mails or mailings, please let us know and we'll make that change.

Click here to download our Summer Chapter newsletter.

Clinical Trials
Clinical Trials need participants. We have quite a few members currently involved in clinical studies to help understand treatments for PKD. The Temp 3/4 (Tolvaptan) Study is still recruiting patients for participation. If you are interested, find out more about the qualifications and details in our area by using the resources below:

Tempo 3/4 Study:
U.S. Information Line: 866-712-5837

Informational Webinars

Don’t miss out on our series of quarterly webinars designed to provide education and information about various medical and lifestyle issues related to polycystic kidney disease.

Click here to visit our NEW learning center and to view our FREE educational webinars!

Come join us! 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. Please reference the schedule below: 

Our meetings take place on the third Thursday of every month at 7:00 p.m.

March 18, 2010 - Chapter Meeting - PKD and Diet: Making Informed Choices
Guest Speaker: Zari B. Ginsburg, MS, RD, CDN, A to Z Nutriton, Manhasset, NY
7:00- 8:00 PM Support Meeting
8:00-9:00 PM Nutrition Lecture

Sachem Public Library, Community Room
150 Holbrook Road
Holbrook, NY 11741

Please join us as we learn to take a closer look at food labels and tips on making choices that are PKD friendly as well as  meet others from our local community affected by PKD. All are welcome and encouraged to attend.

April 15, 2010 - Chapter Meeting  

Sachem Public Library, Community Room
150 Holbrook Road
Holbrook, NY 11741

June 17, 2010 - Chapter Meeting - Transplantation Basics
Guest Speaker: Barbara Wrynn, RN

Waldbaum's Dialysis Center
100 Community Drive
Manhasset, NY 11030

Thursday, March 11, 2010 - "PKD Day” Reception: An Awareness and Recognition Event
6:30 pm to 8:30 pm

Smilow Multi-Purpose Room, NYU Langone Medical Center
550 First Avenue between 30th & 33rd Streets in Manhattan

Please invite your family, friends and fellow PKD constituents to this memorable event when March 11th is proclaimed “PKD Day” in New York City the City of New York and the State of New York. There will also be an Awards Ceremony to honor the Top Individual and Team Fundraisers from the 2009 TriState Walk for PKD AND...

*Coach Kevin Gilbride, Offensive Coordinator of the NY Giants and Honorary Chairman of the 2009 TriState Walk for PKD, and a few of his NY Giants players will stop by for a visit!

*Dr. Edward Skolnik of NYU’s PKD Clinic will give a brief presentation on the latest developments in PKD research.

Cost to Attend:  FREE, but due to capacity restrictions, registrations will be accepted on a first-come, first-served basis. The “PKD Day” Reception will include hors d’ouevres, dinner, dessert and beverages, including beer & wine.

Registration: CLICK HERE to register online. Please register by Monday, March 8th. All registrants will receive a confirmation e-mail in early March with any last minute details. For more information, please e-mail TriStateWalk@pkdcure.org  or call 877-PKD-WALK (753-9255). We look forward to seeing you on March 11th!

Saturday, March 13, 2010 - NYC Metropolitan ADPKD/ARPKD Educational Seminar
10:00 am to 3:00 pm
Check-In Begins at 9:30 am

NYU/Langone Medical Center - Schwartz Lecture Hall F (please note the room change)
550 First Avenue (between 33rd and 34th streets)
New York City, NY

Cost: $15/person which includes a light lunch and beverages
Click here to register online today!

Program will include:

ARPKD: Beatrice Goilav, MD, FAAP, Attending, Pediatric Nephrology, The Children’s Hospital at Montefiore, Assistant Professor of Pediatrics, Albert Einstein College of Medicine, Bronx, NY.

Transplant Nephrologist: Alexander Gilbert, MD, Clinical Assistant Professor of Medicine, Division of Nephrology, NYU School of Medicine and NYU Langone Medical Center, NY,NY.

A to Z Nutrition: Zari B. Ginsburg, MS, RD, CDN, A-Z Nutrition, Manhasset, NY.

Personal Experiences: Marvin McMillen, MD, Chief of Surgical Critical Care and Acute Care Surgery at Beth Israel Medical Center in Manhattan, Board Certified in General Surgery, Surgical Critical Care and Internal Medicine.

Insurance Issues: Charles J. Newman, Life, Disability, Health Insurance, Employee Benefits, The Charles J. Newman Co, LLC.

Please RSVP by 5pm on Wednesday, March 10. To RSVP, please email us at NewYorkCityChapter@pkdcure.org or call Susan at 212-794-1258.

Did you know?
We produce a weekly television program that you can see on Cablevision's Public Access channel. Tune in and check it out!