News and Information
PKD Patient Handbook
The newly updated PKD handbook is now available! The revised handbook has undergone extensive reviews and updating by PKD experts. Topics include PKD signs and symptoms, diet and nutrition, kidney failure, transplantation and more.
Download your digital copy today!
A note from your Chapter Coordinator:
For the past three months, I have had the privilege of participating in the second clinical trial of the promising PKD drug, Tolvaptan. Starting this past October, I began to take the investigational drug/placebo which I will do for the 15 month duration of the study while the investigational team at Tufts Medical Center in Boston and the drug’s maker, Otsuka, evaluate its impact on kidney and liver function, and lifestyle. At this point, the visits are once a month and very quick; each time I go to Tufts, I feel so good to be able to actually be doing something that feels tangible to fight this disease. Tufts is still evaluating and accepting ADPKD patients for this study; I strongly encourage all of you to consider having this same opportunity. You can learn more at: clinicaltrials.gov/ct2/show/NCT02160145?term=tolvaptan+polycystic&rank=1
Local Events and Meetings
Chapter 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 England 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 Judy or Dean at email@example.com.
Check back for updates!
View slides from previous New England Chapter Educational Seminars!
Life's A Beach 5K
Saturday, June 20
9 a.m. - noon
Nelson ParkPlymouth, MA 02360
Save the date for the Life's a Beach 5K (Formerly Mill Pond 5K). Online Registration for the 2015 race will be opening soon.
Adult: $25.00 online / $30.00 on site
Child 10 & Under: $15.00 online / $20.00 on site
Online registration closes on Thursday, June 18th at 11:59 pm
Local PKD Support Group
Local PKD Support Group continues to meet monthly in Manchester, NH. This is an excellent opportunity to meet other individuals whose lives have been affected by PKD in an informal setting. If you have questions or concerns, please join us at these meetings. Friends and family are also encouraged to attend.
Manchester, New Hampshire - Manchester City Library, 405 Pine St., First Monday of each month - 7:00 p.m. to 8:00 p.m. Click here to view our Flyer.
Contact Information: Walter Michelsen at (603) 668-0095 or (603) 512-9678 or Nancy Rideout at (603) 746-5580 or (603) 848-1050 or email PKDSupport@gmail.com.
Support in Rhode Island - If you are looking to connect with others, have questions or concerns, and live in Rhode Island, please contact John Barattini at (401) 231-1337 or firstname.lastname@example.org.
Boston and Rhode Island Walks for PKD
Boston Rhode Island
September 20, 2015 September 12, 2015
DCR Artesani Park Bristol Town Beach
Registration is now open!
To learn more about the Boston walk or to donate, click here.
To learn more about the Rhode Island walk or to donate, click here.
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Next Webinar Wednesday
What are cilia and why do they matter?
PKD Foundation Chief Scientific Officer, David Baron, Ph.D., will discuss what cilia are and why they matter. He will also take time at the end of his presentation to answer your questions.
Latest National Webinar
Pain and PKD
Chronic pain is a major factor affecting the quality of life of a PKD patient and one that is difficult to manage. Dr. Theodore Steinman has spent years working with PKD patients to help them manage their pain and get back to life. In this webinar, Dr. Steinman covers the latest in PKD pain treatment and how to manage daily pain at the various stages of PKD.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.