New England ChapterConnect. Support. Educate.

With the help of PKD Foundation Chapters in cities across the country and beyond, the PKD Foundation provides a forum for patients who want to join in the fight to find a treatment and cure for PKD. Just contact us at newenglandchapter@pkdcure.org to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.

 

 News and Information News and Information

PKD Patient Handbook

June 2015

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


Calendar Local Events and Meetings

Meeting Chapter 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 newenglandchapter@pkdcure.org.

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 Park
Plymouth, 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
 


Meeting 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 ripkd07@gmail.com


Boston and Rhode Island Walks for PKD

 

Walk 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

                                                                                             Register Now!

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Resources Resources

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Next Webinar Wednesday

Webinar Wednesdays with CSO David Baron, Ph.D.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.

Register


Latest National Webinar

WatchPain 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.


Blog

PKD Connection


Discussion Forums

PKD Discussion ForumsPKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.

Join the Conversation


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©2015, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2015, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.