News and Information
A note from your Chapter Coordinator:
Happy winter! Although most of us are hunkered down as we push through the remaining months of this dark New England season, I wanted to bring a PKD “bright spot” to your attention.
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
We are working on our spring seminar! Please save the date for Saturday, March 28 for What’s New in PKD: A Day of Learning. I really hope people will plan to come to the program so we can all meet once again, face-to-face, as we head into a glorious spring here in Boston. Thanks for all of your support and participation.
PKD Foundation News and Announcements
PKD Foundation Chapters are invited to participate in this exclusive, online educational conference! PKD experts from across the United States will discuss complications associated with PKD including aneurysms, hypertension, cardiovascular issues, cardiac valve abnormalities and polycystic liver disease. Click the button to learn more about the online education conference!
Local Events and Meetings
SAVE THE DATE!
What's New in PKD: A Day of Learning
Saturday, March 28
11:30 A.M. - 3:30 P.M.
Registration begins at 10:30 A.M.
Stearns Auditorium Tufts Medical Center
800 Washington Street
Boston, MA 02111
Parking vouchers will be provided for the Tufts garage.
PKD Foundation Chapters are invited to participate in this exclusive, online educational conference! PKD experts from across the United States will discuss topics that are important to PKD patients. The New England Chapter will be hosting Dr. Ron Perrone as one of the guest speakers for the Virtual Conference!
Light refreshments and water will be provided. Feel free to bring your own snacks if you desire.
Online registration for this event is now closed, however, everyone is welcome to join! If you are interested in attending the event or if you have any questions about the Virtual Conference, please email our Volunteer Chapter Coordinator, Judy or Dean, at firstname.lastname@example.org.
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
Save the date for the 4th annual Turpin Sisters Golf Tournament! Check back soon for more details.
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 email@example.com.
Boston and Rhode Island Walks for PKD
The New England Chapter wants to thank everyone for participating and fundraising for the 2014 Walk for PKD. We had a very successful day and appreciate all of the support. We look forward to seeing you this fall at the 2015 New England Walk for PKD
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Latest Free Webinar
Presented by Lawrence Grunfeld, M.D., clinical associate professor of Obstetrics and Gynecology at the Mount Sinai School of Medicine and co-director of Reproductive Medicine Associates of New York
Preimplantation genetic diagnosis, known as PGD, is a screening test used to determine if genetic or chromosomal disorders are present in embryos produced through in vitro fertilization (IVF).
In this webinar, Lawrence Grundfeld, M.D. speaks and answers questions about PGD as it relates to PKD. He is also joined by two families who have chosen to use PGD in family planning.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.