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!
New England Chapter Meet & Greet
Thursday, March 3
6:30 to 8:30 p.m.
72 Shrewsbury St.
Worchester, MA 01604
We hope you'll join the New England Chapter for a time to connect with others in the PKD community.
If you have any questions concerning the Chapter, please email our Volunteer Chapter Coordinators Judy or Dean at email@example.com.
View slides from previous New England Chapter Educational Seminars!
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. 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.
Contact Information: Walter Michelsen at (603) 668-0095 or (603) 512-9678 or Nancy Rideout at (603) 746-5580 or (603) 369-8791 or email PKDSupport@gmail.com.
Support in Rhode Island - If you are looking to connect with others and live in Rhode Island, please contact John Barattini at (401) 231-1337 or firstname.lastname@example.org.
Save the Date!
2016 Sprint Into Spring 5K
April 30, 2016
South Elementary School, Plymouth
Save the date for the 2016 Sprint Into Spring 5K! Check back soon for more information.
Boston and Rhode Island Walks for PKD
Thank you to all who joined us for the Boston and Rhode Island Walks!
We had a great time at both Walks! More info on the 2016 Walk season comin soon!
Check out our favorite memories from the Boston Walk! Our talented Walk coordinator made a video!
Check out our favorite memories from the Rhode Island Walk!
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Next Webinar Wednesday
Wednesday, Jan. 20, 12 - 1 p.m. CST
David will breakdown a published scientific journal article to explain it in simple, straightforward terms. He will discuss an article by K. J. Kelly, et al. in PLOS ONE titled: Improved structure and function in autosomal recessive polycystic rat kidneys with renal tubular cell therapy.
Latest National Webinar
Presented by: David Baron, Ph.D., PKD Foundation CSO
Why does a drug therapy take so long to find? Hear from PKD Foundation Chief Scientific Officer David Baron, Ph.D. as he uses his decades of experience in drug development to explain the process as it relates to PKD.
Watch previous webinars here.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.