News and Information
PKD Foundation News and Announcements
May 13, 2015
Chef Michael Psilakis won part 3 of the Chopped All-StarsTournament and will be in the finale with the chance to win $75,000 for his charity of choice, the PKD Foundation. Food Network did an exclusive one-on-one interview with chef Michael after his big win about being on the show and why he's competing for the PKD Foundation.
Read the exclusive Food Network interview with Chef Michael Psilakis
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
PKD Research Lab Tour
Sunday, June 14
2 pm to 4 pm
Cincinnati Children’s Hospital – Burnet Campus
3333 Burnet Avenue
Cincinnati, OH 45229-3039
Bradley Dixon, MD – Assistant Professor, Division of Nephrology and Hypertension, Cincinnati Children’s Hospital Medical Center. Dr. Dixon previously studied the susceptibility to somatic mutation of the PKD1gene, and is currently working with Dr. Siroky and the Drs. Kleene to study the role of the primary cilium of kidney cells in detecting the osmolality of their surrounding environment. Dr. Dixon is also the CCHMC site principal investigator for the Otsuka TEMPO 4/4 trial, studying the open-label use of tolvaptan in patients with ADPKD.
Brian J. Siroky - Instructor, Cincinnati Children’s Hospital Medical Center Division of Nephrology and Hypertension, has several years’ experience studying the role of cilia in cystic diseases like PKD. He held a Fellowship from the Tuberous Sclerosis Alliance, for a project entitled “Endoplasmic Reticulum Stress in the Pathogenesis and Treatment of TSC Renal Cystic Disease” and a Fellowship from the PKD Foundation to study the role of primary cilia in regulation mammalian target of rapamycin signaling.
Nancy Kleene, PhD - Research Scientist, Department of Molecular and Cellular Physiology, University of Cincinnati, Cincinnati, OH. In addition to collaborating with Drs. Dixon and Siroky, Drs. Nancy and Steve Kleene are using funding from the Baltimore PKD Research and Clinical Core Center to determine how mutations in the PKD gene, PKD2, cause disease.
Steven Kleene, PhD - Professor, Department of Molecular and Cellular Physiology, University of Cincinnati, Cincinnati, OH. Steve has more than two decades of experience in the analysis of ion channels in cilia. He has recently begun to study PKD because one of the genes that is mutated in PKD is a ciliary ion channel. In addition to the collaborations described above, he is the Principal Investigator on the National Institutes of Health grant to examine ciliary channels in the primary cilia of the kidney cells.
Reserve your spot by Friday, June 12
Park in the Underground Visitor parking lot and take your parking ticket with you. Take the elevators up to the Concourse level, and follow signs to the Welcome Center in Concourse B. (the hospital campus is like an airport with different services in different concourses) Your parking ticket will be validated at the Welcome Center and this is where we will meet.
If you have questions about the event 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
Save the Date
September 27, 2015
Voices of America Park
Sign Up to Receive Information From Your Chapter
Latest Free Webinar
Hear from our new Chief Scientific Officer David Baron, Ph.D., who is also a PKD patient. David shares what we have gained from our PKD research work to date and where we are headed with the Accelerating Treatments to Patients program.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.