An Open Letter from the PKD Foundation's Chief Scientific Officer
Dear PKD Family,
To find treatments and a cure for PKD, people diagnosed with PKD need to consider participation in human clinical trials of experimental new therapies. Participating in a clinical trial is an important way for people to help to find a cure for PKD and its complications. That's particularly true today, when the Foundation’s nearly 30 years of research leadership has brought us to the point where scientific advances made in the laboratory are being tested in people.
In order to ensure you have the information you need to consider clinical trial participation, the PKD Foundation has created a new communications program, called Accelerating Clinical Trials Alert, or ACT Alert. This program is designed to help people with PKD better understand what is involved in participating in a clinical trial, and to simplify the process of finding trials that may be of interest to them or to their family members. The goal of this program is to serve as a resource on the latest research advances, new research studies, and information about opportunities to participate in clinical trials.
Through email communications, Chapter education and communications and on the PKD Foundation website, we will be providing information and resources concerning the clinical trial process and about specific FDA-approved clinical trials in PKD.
Currently, there is a clinical trial for PKD seeking volunteer patients in your area. Please click on the link below to obtain contact information directly from the trial’s pharmaceutical sponsor for the study center near you, go to:
https://trialinfoemail.pfizer.com/pages/landing.aspx?StudyID=B1871019&StudyName=Bosutinib%20For%20Autosomal%20Dominant%20Polycystic%20Kidney%20Disease
Click on the link below to the National Institute of Health’s (NIH) Clinical Trials information website for specific information about this clinical trial, being sponsored by Pfizer:
http://www.clinicaltrials.gov/ct2/show/NCT01233869?term=polycystic+kidney+disease&rank=7
The NIH clinical trials website provides comprehensive information about the clinical trial process, with answers to many frequently asked questions, located at:
http://www.clinicaltrials.gov/ct2/info/understand
If you have PKD, we encourage you to consider participating in the clinical trial process by speaking with your medical team. If you care about someone else who has PKD, we encourage you to forward this ACT Alert to them for their consideration.
Please note that although FDA-approved clinical trials may be of scientific and medical value, the PKD Foundation does not review these studies and therefore cannot endorse participation in them. The PKD Foundation does not take responsibility for the trial conduct; liability lies within the trial’s sponsor and participating university/hospital/clinic. Inquiries regarding trials should be directed to the trials contact person or institution, not the PKD Foundation. The PKD Foundation does not take responsibility for accuracy of clinical trial information provided.
Thank you for joining in the fight against PKD!
Jill A. Panetta, Ph.D.
Chief Scientific Officer
PKD Foundation
The Hudson Valley Chapter is looking for a new Chapter Coordinator
After seven great years of volunteer service to the PKD Foundation, Heidi Cambareri is stepping down. Please click here to read her letter and for contact information if you are interested in leading this great group.
Thank you Heidi for your dedication and support to the Hudson Valley Chapter and the PKD Foundation.
Educational Seminar Materials
Materials and hand-outs are now available here from the NY Area Metropolitan Education Seminar. If you have any difficulty opening any of the documents, please email Amy Beecham at amyb@pkdcure.org. Thank you.
NY Education Seminar Agenda
Current State of Clinical Trials in ADPKD
Insurance Issues for those with PKD
PKD Kidney Friendly Diet
PKD In Children
Updates in Kidney Transplants
Chapter Member News
Chapter members Jeanne Tobin and Bob Sayah have just taken part in a kidney transplant chain... Jeanne received a kidney from a donor all the way in California and then her husband Bob (who was not a match for Jeanne) donated his left kidney to a recipient in NY. Bob has blogged about the whole process and it is fascinating. Check out www.teamteddybear.blogspot.com to read all about it.
Chapter Resources
Are you in need of support or just looking to speak with another PKD patient, family member or caregiver? Sandy Grossman is our Support Leader and she will do her best to meet your needs and get you in touch with the right person. Contact Sandy at sgrossman4@gmail.com and let her know what you need!
Are you interested in PKD Advocacy? Concerned about PKD patients' needs being heard in Congress and the Senate? Sue Wang is available to serve as a resource to help you get your opinions heard and get involved in important "Action and advocacy initiatives." Contact Sue at pkd_advocacyhudson@yahoo.com.
Learn More About PKD.
Don’t miss out on our series of quarterly webinars designed to provide education and information about various medical and lifestyle issues related to polycystic kidney disease.
Click here to visit our NEW learning center and to view our FREE educational webinars!
Make a difference in the lives of 12.5 million people.
The Hudson Valley Chapter is currently looking for the following volunteers:
Fundraising Leader: Take the lead as serve as a resource to help our Chapter plan some new fundraisers throughout the year! Perhaps a book wrap, wine tasting, tag sale, or golf outing would interest you.
Education Leader: Help us line up guest speakers for Chapter meetings and participate in the planning for our annual Educational Seminar.
Volunteer Leader: Help support, cultivate and recruit volunteers for a variety of events!
If you have one hour or 10, we would love to have you join in our mission! Contact Heidi Cambareri at 
914-953-1163 or by email at hudsonvalleychapter@pkdcure.org to find out more about volunteering!