News and Information
A note from your Chapter Coordinator:
Greetings from your New England PKD Chapter,
Winter has finally arrived in New England. Typically, Chapter Leadership spends the first few months of the year planning our activities for spring, summer and fall. Our 2016 Walk Committee is just forming now and always looking for volunteers. While Walk and other planning is in process, we want to share a new set of events being introduced: “PKD Meet & Greets.” These are local events being planned throughout our region. The idea is to pick a coffee house, or other establishment, and schedule a 2-3 hour time slot for people with PKD, and their family and friends, to come together to share stories and experiences. We ran our first event in Lynnfield, Ma. back in December and it was very successful. There is no agenda or presentation. We’ll have volunteers from the Chapter in attendance to share PKD Foundation news and events, but the real value is in talking to other people in our PKD community. Our next event is March 3, 2016 in Worcester. Details are available in the events section of the New England Chapter page on the PKD Foundation website.
We want to hold these events throughout our region. It is helpful to have a local volunteer help to find a location for the event. If you are interested in helping plan a “Meet & Greet” in your area, please write us at NewEnglandChapter@PKDCURE.ORG. Be on the lookout for announcements of future locations and please try to join us. You may learn something new about PKD, or share something new with a new acquaintance and help them in their PKD journey. Chapter leadership is also planning some education events for later in the spring; watch your email for more information soon.
Dean Lotito and Judy Ehrlich
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!
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!
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.
Sprint Into Spring 5K
South Elementary School178 Bourne RoadPlymouth, MA 02360
Join us at the 2016 Spring Into Spring 5K to benefit the PKD Foundation! Pre-registration is open through April 28th. For more information, click here to visit the Sprint Into Spring 5K website.
Fifth Annual Turpin Sisters Golf Tournament
Wachusett Country Club187 Prospect Street
West Boylston, MA
Save the date for the 5th Annual Turpin Sisters Golf Tournament. Proceeds from this event will support the PKD Foundation.
For event or sponsorship information, please visit the event website or email Nancy and Kristen at email@example.com.
Boston and Rhode Island Walks for PKD
Save the date! - Boston! Save the date! - Rhode Island
Sept. 11, 2016 Sept. 17, 2016
Artesani Park Bristol Town Beach
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Latest Webinar Wednesday
Total Kidney Volume (TKV) is a key biomarker for PKD clinical studies. Learn exactly what it means, how it is calculated and why it is an important tool for the development of new therapies for the treatment of PKD.
Learn more about Webinar Wednesdays or watch previous webinars here.
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.