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 firstname.lastname@example.org for the Chapter Co-Coordinator position or Sue Full, Walk for PKD Manager at email@example.com for the Walk Co-Coordinator position.
July 11 - 15, 2014
The Transplant Games of America is a multi-sport festival event for individuals that have undergone life-saving transplant surgeries. The games are more than an athletic event! They highlight the importance of organ donation and celebrate the lives of organ donors and recipients. For more information about the 2014 Transplant Games of America and to register to participate, visit www.transplantgamesofamerica.org.
The PKD Foundation plans to attend the 2014 games to celebrate with PKD patients that have received a kidney transplant, living kidney donors and their families. If you plan to participate, please take our brief survey!
Registration for fall Walks is now open. With more than 50 Walks across the country and the Virtual Walk, we can all unite to fight PKD.
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 firstname.lastname@example.org.
Check back for meeting updates!
Syracuse Walk for PKD
Saturday, September 20
Onondaga Lake Park, Saw Mill Creek Shelter
For more information, click here!
Sunday, November 2, 2014
Are you a runner? Is someone you know a runner?
We are looking to fill the last few spots in the 2014 TCS New York City Marathon within the next three weeks! Click here to view the participation opitons. Register today to secure your spot in this bucket list race.
Most importantly, you will run with the satisfaction of knowing that you’re part of the fight against polycystic kidney disease through your fundraising commitment.
Questions? Contact us at email@example.com or 816.268.8469.
May 19, 2014
Presented by Howard R. Winokuer, Ph.D.
Dealing with the reality of PKD is a very difficult situation. It is challenging to know how to talk to your children, even young adults, about PKD. As a result of attending this webinar, you will understand how to talk with your teen or young adult about PKD. Our presenter for this webinar is Howard R. Winokuer, Ph.D. Fran Towey, Jr., and his daughter Katie will also join us to share their story of being diagnosed with PKD as a teen.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.