We Have A NEW Name.

For some years now, we've been known as the Greater New York Chapter. While we cover a "great" area, the name does not easily identify where our members are from. We've received calls from folks that were not aware there even is a chapter here on Long Island. Since helping others find support and educating the community about PKD is so important, we've decided that our name needs to better represent WHO we are.

Did you know our chapter covers all of Suffolk County, Nassau County and Queens? We will now be known as the Long Island Chapter. Please bear with us as we change our name. Our new e-mail address will be 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.

Connect with other PKD patients and families in your area.    

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, Queens, Staten Island and Brooklyn, 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.

November 20, 2008 - Sachem Public Library
December 2008 - Pot Luck Holiday Party - Details TBD

January 15, 2009 - Sachem Public Library
February 19, 2009 - Manhasset: Waldbaum's Dialysis Center
March 2009 - NYC Metropolitan Area ADPKD/ARPKD Educational Seminar - Details and Speakers: TBD

For more information on our monthy meetings, please contact us at longislandchapter@pkdcure.org.

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!

Learn More About PKD.

Click here to view our Summer Newsletter.

Webinar on PKD: "Basics of PKD"

The PKD Foundation hosted its first webinar Tuesday, October 14th. This free webinar “Basics of PKD” is now avaliable for everyone to view. The presentation was conducted by Dr. Ron Perrone, Associate Chief, Division of Nephrology of Tufts Medical Center (Boston) and Chair of the PKD Foundation Scientific Advisory Committee. 

This was the first in a series of quarterly webinars designed to provide education and information about various medical and lifestyle issues related to polycystic kidney disease. For more information on this and other webinars please click HERE.

Clinical Trials
Clinical Trials need participants. We have quite a few members currently involved in clinical studies to help understand treatments for PKD. Both the HALT Study and the Temp 3/4 (Tolvaptan) Study are 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:

HALT Study: 
Peachy Simon, BSN, RN, CNN
866-846-2735 or psimon@tufts-nemc.org

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

Join in a variety of fun events.

Sunday, November 16, 2008 - "Pokey Moe" Quilliam Memorial Fundraiser
12:00 p.m. to 5:00 p.m.
Brokerage Comedy Club
2797 Merrick Road
Bellmore, NY 11710

Please join us for this fun event. The Long Island Fingerstyle Guitar Club is hosting a multi-band musical affair in memory of a founding member who passed from PKD. We will also have a pick-a-prize raffle. The cost is $10 per person. Come join us and bring a friend!

We have a lot of great events for 2008. Please check back often for updates!

Make a Difference in the lives of 12.5 million people.

There are jobs for everyone, big and small. Just contact us at GreaterNewYorkChapter@pkdcure.org to find out how you can make a difference in the lives of 12.5 million people!