News and Information
PKD Foundation News and Announcements
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!
Make a Difference in the Lives of Millions of People
We are looking for volunteers to help with some small duties to keep our Chapter growing, and raise PKD awareness in our area.
- Contact the Kidney Foundation of Cincinnati to find out if we can have a booth at their Walk on June 1.
- Spread the word about the Foundation's Run for PKD program. Visit runforpkd.org for more information and current team opportunities.
- Invite friends and family to like our Chapter's Facebook page to increase awareness and fundraising efforts.
Help is always welcome in these following areas as well:
- Keeping the Chapter aware of what's happening in Washington, DC. It's easy with Foundation emails.
- Working on the Walk for PKD 2015, the signature fundraising event for the PKD Foundation.
- Putting information about PKD in your doctors' offices.
- Speaking in front of groups speak about PKD at service groups like Kiwanis or Sertoma. These groups usually have a speaker at their monthly meetings, and this is an easy way to help spread the word about PKD. We can supply you with a script, PKD handouts and materials.
Please contact Deborah Watson at email@example.com if you would like more information or to volunteer for one of these jobs or one that you would like to create which uses your talents for the Chapter.
Don't forget to re-register to earn money for the foundation every time you shop. It must be done every year. See below for more information.
Follow these steps:
- Be sure to have your Kroger Plus Card handy when registering with Kroger.
- Go to http://www.krogercommunityrewards.com
- Click on Sign In/Register
- If you are a brand new online customer (which almost everyone is), you must click SIGN UP TODAY in the new customer box.
- Sign up for a Kroger Rewards Account by entering zip code, clicking on your favorite store, and entering your e-mail address, creating a password and agreeing to terms and conditions.
- You will then get a message to check your email Inbox. Click on the link within the body of that email to have your browser go to the next signup webpage in the process.
- Click on My Account and use your email address and password and proceed to the next step.
- Click on Edit Kroger Community Rewards information and input your Kroger Plus Card number or your alternate id. It is the long number under the Bar Code on the back of the Kroger Plus Card.
- Update or confirm your information.
- Enter PKD. Select organization from list and click on confirm.
- To verify you are enrolled correctly, you will see PKD's name on the right side of your information page.
- If you use your phone number at the register (instead of a card), you can call (877) 576-7587 to get your Kroger Plus Card number.
- When you shop, please swipe your registered Kroger Plus Card or use the phone number that is related to your registered Kroger Plus Card for your purchases to count for credit.
- You must have an email address to apply.
- Once you have successfully signed up, your receipts from the store will say a donation was made to Cincinnati/Dayton PKD Chapter. If this is not on your register receipt you are not signed up properly and should try to re-register.
- For help please contact Peggy Burwinkel at 859-496-7051
Local Events and Meetings
Chapter Educational 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!
Wednesday, July 15
7 - 8 p.m.
7725 Voice of America Center Drive
West Chester, OH 45069
Join us to learn more about ARPKD and meet others within the PKD family.
If you have any questions concerning support meetings, please email our Volunteer Chapter Coordinator at firstname.lastname@example.org .
PKD Research Lab Tour - June 14, 2015
Members of the Cincinnati/Dayton chapter of the PKD Foundation were introduced to basic and clinical PKD research at Cincinnati Children's Hospital Medical Center and the University of Cincinnati College of Medicine. Dr. Steve Kleene explained how calcium channels in renal cilia could influence the development or repair of cysts. Dr. Brian Siroky spoke about how a failure to accommodate changes in renal salt concentration (osmolarity) could contribute to the development of cysts. The group toured labs where they learn about how cultured renal cells are used to model PKD and how PKD proteins are analyzed. They learned that a new gene editing technique has made it much easier to produce cultured cells that lack PKD-related proteins. They viewed primary cilia on live renal cells using a state of the art microscope. They learned how the amounts of PKD-related proteins on cilia are quantified to monitor changes in response to treatments. Dr. Brad Dixon reviewed recent PKD clinical trials. Dr. Heather Duncan explained how clinical trials are run.
Download the lab tour handout!
The Cincinnati/Dayton Chapter wants to thank our own Beth Klaine, a nurse with a degree in Nutrition, for taking us on a PKD nutritional tour of the Harpers Point Kroger on Tuesday evening, October 21. Beth spent about 1 1⁄2 hours drawing our attention to the sodium, potassium, protein, and sugar content of various foods located through-out the store.
Beth suggested the following web sites, publications and apps if you want to learn more about good PKD nutrition:
1. PKD Foundation: www.pkdcure.org
2. National Kidney Foundation: www.kidney.org
3. Astellas Pharmaceuticals: www.transplantexperience.com
4. American Heart Association:www.heart.org/HEARTORG (Look for "Getting Healthy" tab)
Publications: Nutrition Action www.cspinet.org
1. Kidney Diet
2. My Fitness Pal
Cincinnati/Dayton Walk for PKD
September 27, 2015
Voices of America Park
Registration is now open!
To learn more about the Cincinnati/Dayton walk or to donate, click here.
Sign Up to Receive Information From Your Chapter
Next Webinar Wednesday
What are cilia and why do they matter?
PKD Foundation Chief Scientific Officer, David Baron, Ph.D., will discuss what cilia are and why they matter. He will also take time at the end of his presentation to answer your questions.
Latest National Webinar
Pain and PKD
Chronic pain is a major factor affecting the quality of life of a PKD patient and one that is difficult to manage. Dr. Theodore Steinman has spent years working with PKD patients to help them manage their pain and get back to life. In this webinar, Dr. Steinman covers the latest in PKD pain treatment and how to manage daily pain at the various stages of PKD.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.