News and Information
Your local PKD Syracuse Chapter is currently seeking a volunteer Chapter Co-Coordinator and a volunteer Walk Co-Coordinator.
- The Chapter Co-Coordinator will work with the Chapter Coordinator to represent the PKD Foundation in the local community and act as a liaison between the Foundation and local constituents. This volunteer position focuses on education, fundraising and support and requires about one hour a week.
- The Walk Co-Coordinator will work with the Walk Coordinator to organize logistics for the Walk, recruit volunteers, secure sponsorships, and encourage team captains and participants. Responsibilities also include promoting the walk within the community, and raising awareness of PKD and the Foundation. This position requires about one hour a week with more time needed as you approach your Walk event date.
As a local Coordinator, you will be one of the first to hear about mission critical updates when you join a network of more than 100 coordinators across the nation. We have many online support tools and resources and offer in person leadership training in Kansas City in February. The Foundation covers your airfare and most meals for the weekend. It is a great time to meet and connect with other volunteer leaders across the county.
Please contact Cindy LeBlanc, Chapter Relations Manager at email@example.com for the Chapter Co-Coordinator position or Sue Full, Walk for PKD Manager at firstname.lastname@example.org for the Walk Co-Coordinator position.
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Local Events and Meetings
The Syracuse Chapter does not have any local meetings scheduled at this time but we do want to hear from you. If you would like to connect with our Volunteer Chapter Coordinator, please email us at email@example.com.
Check back for meeting updates!
Syracuse Walk for PKD
The Syracuse Chapter wants to thank you for joining us at our Walk for PKD. We had a very successful day and appreciate all of those that donated or came out to the walk. Registration for the event is now closed, but donations are still being accepted through December 31.
Latest Free Webinar
Presented by Ronald D. Perrone, M.D., HALT study principal investigator
This webinar shared the results of the HALT-PKD clinical trials, which were announced on Nov. 15, 2014, at the American Nephrology (ASN) Kidney Week meeting. This was the first prospective, randomized clinical interventional study for adults with autosomal dominant polycystic kidney disease (ADPKD). These studies are important to the PKD community because neither the optimal blood pressure target levels, nor the best medications for control of blood pressure in ADPKD, were known when the study was started in 2006 (the study was completed in June 2014). Currently, the complications of hypertension, including stroke and heart attack, affect many more individuals with ADPKD than ADPKD-specific complications such as liver cysts or brain aneurysms.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.