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 firstname.lastname@example.org 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!
Although the Cinncinati/Dayton 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 at email@example.com .
Check back for updates!
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
PKD Research Lab Tour
Adults and children over the age of 10 were invited to participate in a discussion of current Polycystic Kidney Disease (PKD) research and went on a tour of the Cincinnati Children’s Hospital and University of Cincinnati labs where local PKD research is conducted on May 18. You can read the lab tour handout which is an article with links that was written by the researchers.
A few photos from the lab tour!
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.