Welcome to the PKD Foundation’s Cincinnati/Dayton Chapter Website!
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.
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.
Better Together at the PKD National Convention
June 20–22, 2014
Kansas City, Mo.
This June, the PKD community will unite in Kansas City for three days of relationship building, education and fun. Join us as we hear from experts in the field, including Gregory G. Germino, M.D. of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health and leading ARPKD expert Lisa Guay-Woodford, M.D. Whether you are a PKD patient, caregiver or family member we know you will walk away from the Convention with new connections, friends and practical tips for managing your health or supporting a loved one.
Visit pkdcure.org/convention to register and learn more.
Transplant Games of America
July 11 - 15, 2014
The Transplant Games of America is a multi-sport festival event for individuals that have undergone life-saving transplant surgeries. The games are more than an athletic event! They highlight the importance of organ donation and celebrate the lives of organ donors and recipients. For more information about the 2014 Transplant Games of America and to register to participate, visit www.transplantgamesofamerica.org.
The PKD Foundation plans to attend the 2014 games to celebrate with PKD patients that have received a kidney transplant, living kidney donors and their families. If you plan to participate, please take our brief survey!
KROGER COMMUNITY AWARDS PROGRAM
*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:
1. Be sure to have your Kroger Plus Card handy when registering with Kroger.
2. Go to http://www.krogercommunityrewards.com/
3. Click on Sign In/Register
4. If you are a brand new online customer (which almost everyone is), you must click SIGN UP TODAY in the new customer box.
5. 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.
6. 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.
7. Click on My Account and use your email address and password and proceed to the next step.
8. 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.
9. Update or confirm your information.
10. Enter PKD. Select organization from list and click on confirm.
11. To verify you are enrolled correctly, you will see PKD's name on the right side of your information page.
12. 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.
13. 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 Dayton Cincinnati 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
Cincinnati-Dayton PKD Foundation Networking Meeting
Friday, April 25, 2014
7 - 8 p.m.
11397 Montgomery Road
Discussion Topic: Transplants
Please join us for the opportunity to get to know others that are affected by PKD. You are not alone.
If you have questions about our Chapter or would like to connect with our Volunteer Chapter Coordinator, please email Deborah at email@example.com.
PKD Research Lab Tour
Sunday, May 18, 2014
2:00 -4:00 p.m.
Cincinnati Children's Hospital - Burnet Campus
3333 Burnet Avenue
Cincinnati, OH 45229-3039
Cincinnati Children's Hospital - Burnet Campus Map
Adults and children over the age of 10 are invited to participate in a discussion of current Polycystic Kidney Disease (PKD) research and to tour of the Cincinnati Children’s Hospital and University of Cincinnati labs where local PKD research is conducted. Researchers will summarize leading PKD hypotheses, explain their own PKD research, and describe the collaborative efforts of the several PKD research projects. They will conduct a tour of their labs to demonstrate the techniques used to test their hypotheses (e.g. microscopy, electrical recording, protein and DNA analysis, kidney cell culture). The researchers strongly encourage your questions during this presentation.
Reserve your spot by Friday, May 16, 2014
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 - Research Associate, 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.
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.
The Cincinnati/Dayton Chapter currently does not have any local events planned at this time. Please check back often or email firstname.lastname@example.org with any questions.