My name is Jean Sommer and I am the St. Louis Chapter and Walk Coordinator. In 2001, I was diagnosed with ADPKD2. My sister and brother have it also. My sister and I have rare massive Polycystic Liver Disease (PLD). After our mom died from complications after brain surgery for an aneurism rupture, we (and our doctors) believe that she had PKD.
In 2004, I became involved with the St. Louis Chapter because I wanted to connect with others and learn as much as possible about this disease. Back then, the St. Louis Chapter was mainly a support and fundraising group. This group was very positive and helped calm me down through listening to the members share their stories and experiences.
In February 2014, I attended the Leadership Conference, filling in for the Chapter Coordinator. After arriving, I discovered St. Louis did not have a Chapter or Walk Coordinator anymore. I switched gears and attended Walk Training sessions and became the Walk Coordinator.
As a Walk Coordinator, my focus was on gathering sponsors, motivating past team captains, inviting key donors, and contacting local media. I simplified set-up by purchasing metal garage sale signs holders for our signage, designing reusable signage, creating new bases and poles for hanging banners, purchasing pre-blown up balloons and producing standard set-up and clean-up instructions for each station that can be reused for future walks.
Later that year in December, I became the Chapter Coordinator and continued on as the Walk Coordinator. My goals as the Chapter Coordinator were to increase attendance, provide support, encourage post-transplant PKD members to continue attending meetings, and bring medical professionals to our meetings for education and spread PKD awareness.
Today, we have a Washington University Hospital nephrologist and a variety of other physicians from SSM Health Saint Louis University Hospital speaking at our meetings, volunteering during the Walk for PKD, and/or sponsoring the Walk for PKD.
Our Chapter holds monthly education and support meetings, which are also offered as conference calls to anyone impacted by PKD. Our Chapter hosts other events as well, including Kidney Fight Trivia Night, percentage-of-food-bill fundraisers, and A Day of Learning. We spread PKD awareness by attending health fairs and gathering PKD patients to tell their stories for media coverage. We have an unofficial sister Chapter in Springfield, Ill., that I send meeting notes or slides to share.
Our Chapter is currently contacting 12 local nephrologists in order to get packets in waiting rooms that will inform PKD patients about our local PKD Chapter support group. We also want PKD patients to know that the PKD Foundation has a handbook available. A month ago, a display was set up at the Nephrology Clinic at Barnes-Jewish Hospital. This display is just the start of our efforts to raise awareness and provide education.
By attending educational meetings and events that the St. Louis Chapter and the PKD Foundation provided, I was prepared for the day I would need a liver transplant. That day came on Aug. 11, 2016. I had a liver transplant at the Saint Louis University Hospital Transplant Center. The surgeons removed my 35-pound polycystic liver, and ever since, life is good!
If you’re interested in volunteering with your local PKD Foundation Chapter, sign up here to get involved!