News and Information
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We are looking for volunteers to help with some small duties to keep our Chapter growing, and raise PKD awareness in our area.
The Cincinnati-Dayton Chapter and Walk Coordinators recently attended the PKD Foundation Leadership Conference in Kansas City, MO.
It was a great conference where Coordinators shared ideas and support for the effort of the Foundation to find a treatment for PKD. If you want a copy of the notes Deborah Watson, Chapter Coordinator, took at the meetings, please contact her through the chapter email: email@example.com
Deborah Watson and Ann Wiesman, the Chapter/ Walk Coordinator, took the following action items on behalf of the Chapter over the next several months, but help is needed; please contact Deborah Watson if you can help make these ideas happen.
- 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:
- Helping on the Wine and Cheese Fundraising team.
- Keeping the Chapter aware of what's happening in Washington, DC. It's easy with Foundation emails.
- Working on the Walk for PKD 2014, 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.
Shop with AmazonSmile this holiday season to benefit the PKD Foundation. When you shop at AmazonSmile, Amazon will donate 0.5% of the purchase price to the PKD Foundation. Learn more and start your shopping at smile.amazon.com.
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
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
The Cincinnati/Dayton Chapter wants to thank you for joining us at our Walk for PKD. We had a very successful day and appreciate all of those that donated or came out to the walk. Registration for the event is now closed, but donations are still being accepted through December 31.
Latest Free Webinar
Presented by Ronald D. Perrone, M.D., HALT study principal investigator
This webinar shared the results of the HALT-PKD clinical trials, which were announced on Nov. 15, 2014, at the American Nephrology (ASN) Kidney Week meeting. This was the first prospective, randomized clinical interventional study for adults with autosomal dominant polycystic kidney disease (ADPKD). These studies are important to the PKD community because neither the optimal blood pressure target levels, nor the best medications for control of blood pressure in ADPKD, were known when the study was started in 2006 (the study was completed in June 2014). Currently, the complications of hypertension, including stroke and heart attack, affect many more individuals with ADPKD than ADPKD-specific complications such as liver cysts or brain aneurysms.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.