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: firstname.lastname@example.org
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 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.
PKD Foundation News and Announcements
PKD Foundation Chapters are invited to participate in this exclusive, online educational conference! PKD experts from across the United States will discuss complications associated with PKD including aneurysms, hypertension, cardiovascular issues, cardiac valve abnormalities and polycystic liver disease. Click the image to learn more about the online education conference!
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
What's New in PKD: A Day of Learning
Saturday, March 28, 2015
11 a.m. - 3:00 p.m.
Coldwell Banker West Shell Office - Second Floor
9321 Montgomery Road
Cincinnati, OH 45242
PKD Foundation Chapters are invited to participate in this exclusive, online educational conference! PKD experts from across the United States will discuss topics that are important to PKD patients.
Come and go as your schedule allows. A light lunch will be provided.
Online registration for this event it now closed, however, everyone is welcome to join! If you are interested in attending or if you have any questions about this event please email our Volunteer Chapter Coordinator, Deborah at firstname.lastname@example.org.
Save the date!
Monthly Chapter Support Meeting
Topic: PKD and Pain
Friday, April 17
7 to 8 p.m.
Panera Bread - Voice of America Center
7725 Voice of America Center Drive
West Chester, OH 45069
Check back closer to the event for online registration!
If you have any questions about our monthly support meetings please email our Volunteer Chapter Coordinator, Deborah at email@example.com.
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. We hope to see you all at the 2015 Walk for PKD!
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Latest Free Webinar
Presented by Lawrence Grunfeld, M.D., clinical associate professor of Obstetrics and Gynecology at the Mount Sinai School of Medicine and co-director of Reproductive Medicine Associates of New York
Preimplantation genetic diagnosis, known as PGD, is a screening test used to determine if genetic or chromosomal disorders are present in embryos produced through in vitro fertilization (IVF).
In this webinar, Lawrence Grundfeld, M.D. speaks and answers questions about PGD as it relates to PKD. He is also joined by two families who have chosen to use PGD in family planning.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.