During the legislative year, the PKD Foundation sends alerts of when to contact our senators and congress representatives to vote for specific bills. I would always send an e-mail to my Senators and Senator Deb Fischer would always respond. At the PKD Foundation Conference in June 2016, Karen Thurber, former Florida Representative, encouraged us to make an appointment with our representatives so that they can get to know the PKD Foundation and the PKD community. She also told us that meeting with the staff of the senators can be just as effective.
On August 10, 2016, the Nebraska Chapter of PKD Foundation met with Denise Barrett, Outreach Representative, from the Office of U.S. Senator Deb Fischer. We presented a 10 slide PowerPoint that explained PKD, showed pictures of a PKD kidney and liver, described the cost of dialysis and transplantation, and discussed three local newspaper PKD stories. In the PowerPoint, we also asked the Senator to join the Congressional Kidney Caucus and Rare Disease Caucus, to vote for 21st Century Cures, support the National Institute of Health (NIH) and to join us at our PKD walk on October 8th.
Denise was very enthusiastic to learn everything about PKD, having been a kidney donor for her sibling. It was a meaningful meeting filled with emotional personal stories shared by the Nebraska Chapter. Denise said she would be honored to share our information with the Senator and to deliver our requests.
Thank you, PKD Foundation, for providing the tools, resources and support to educate our representatives.
Jennifer Tompkins Kirshenbaum is a Volunteer Education Coordinator for the PKD Foundation.