News and Information
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.
- 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 2016, 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 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!
Cincinnati-Dayton Chapter Support & Walk Planning Meeting
Sunday, May 15
2 to 4 p.m.
7725 Voice of America Centre Dr.
West Chester, OH 45069
If you have any questions concerning our Chapter meetings or would like to connect with our Chapter, please contact Volunteer Chapter Coordinator Deborah at email@example.com.
2016 PKD Research Lab Tour
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
Save the date!
Sept. 25, 2016
Voice of America Park
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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.