News and Information
Thank you for joining us at the Boston and Rhode Island Walks!
The Walk may be over but fundraising will remain open until Dec. 31. Click the button below to make a donation to the Boston Walk or Rhode Island Walk today!
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 firstname.lastname@example.org.
Check back for updates!
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. 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 email@example.com.
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!
Sign Up to Receive Information From Your Chapter
Next Webinar Wednesday
Wednesday, Oct. 21, 12 - 1 p.m. CDT
PKD Foundation Chief Scientific Officer David Baron, Ph.D., will discuss the new study looking at (pioglitazone) Actos as a potential drug therapy for PKD. Guest speaker Bonnie Blazer-Yost, Ph.D., principal investigator for the study, will join the discussion.
Next National Webinar
Wednesday, Oct. 14, 7 - 8 p.m. CDT
Presented by: Margot Troutt-Keys, LCSW
Join us for a discussion about the emotional toll PKD takes on a person and their family. Learn tips for coping and get advice for staying positive in the face of health adversity.
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.