News and Information
June 11 - June 14
The Donate Life Transplant Games is a multi-sport festival event produced by the Transplant Games of America for individuals who have undergone life-saving transplant surgeries. Competition events are open to living donors, organ transplant recipients, bone marrow, corneal and tissue transplant recipients. More than an athletic event, the Donate Life Transplant Games highlight the critical importance of organ, eye, and tissue donation, while celebrating the lives of organ donors and recipients.
Volunteers are needed - 4 hour shifts. If you are interested in volunteering, please contact Sheila at email@example.com.
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!
Lisa is a music teacher at Liberty Elementary School in North Ridgeville, Ohio, and the student council organized a fundraiser to raise money for the PKD Foundation, raising nearly $500 to help fight PKD.
Lisa Cormack has three children, and her girls, Jaina (age four) and Chesley (age 1), have ARPKD. Her son, Dougie (age 2), is a carrier of the gene. When Jaina was diagnosed last summer, her blood pressure was more than double what it should be for a child. Her kidneys were larger than a normal adult kidney, her liver had fibrosis on it and her heart was thickened on the left side from high blood pressure.
"We had no idea she even had this disease, let alone could be in such poor health," Lisa said. "Since ARPKD is a recessive disease, my husband and I didn't know we were carriers and could possibly pass such a deadly disease on to our children. We are very lucky to have such healthy children today. We pray every day their kidneys last as long as they can, seeing as the average age for transplants for this disease is 10 years old."
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 Northeast Ohio 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 Coordinator, Sheila, at firstname.lastname@example.org.
Check back for meeting updates!
Northeast Ohio Walk for PKD
Thank you to all who joined us for the 2015 Northeast Ohio Walk for PKD!
We had a great time! Check out some of our favorite memories from the Walk here.
Save the date!
Sept. 17, 2016
Bedford Reservation, Egbert Shelter
If you are interested in volunteering with the Northeast Ohio Walk for PKD, contact the Walk team at email@example.com.
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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.