News and Information
PKD Foundation News and Announcements
April 22, 2015
Chef Michael Psilakis will be competing against fellow celebrity chefs on Food Network's fourth season of Chopped All-Stars. Michael's episode airs Tuesday, May 12 at 9 p.m. Central Time. If he advances and wins in the final competition round on May 26, Michael will donate $75,000 to the PKD Foundation, his charity of choice.
Read more about Chef Michael Psilakis
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!
4th Annual Turpin Sisters Golf Tournament
Thursday, June 4
8:30 a.m. Registration
9:30 a.m Shotgun Scramble-Style Tournament
Wachusett Country Club 187 Prospect StreetWest Boylston, MA 01583
Join us for the 4th annual Turpin Sisters Golf Tournament! Click here to learn more about this annual event.
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
Save the Date
Boston Rhode Island
September 20, 2015 September 12, 2015
DCR Artesani Park Bristol Town Beach
June 1, 2015
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Latest Free Webinar
On March 28, 2015, PKD Foundation Chapters were invited to participate in an exclusive, online educational conference! PKD experts from across the United States discussed topics that are important to PKD patients. This year's focus was complications associated with PKD including aneurysms, hypertension, cardiovascular issues, cardiac valve abnormalities and polycystic liver disease. Not everyone that has PKD will experience every complication associated with the disease however, understanding these issues will help you to be your best advocate when you visit your physicians.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.