Gratitude: A celebratory benefit for the PKD Foundation

Katherine MichielsKatherine Michiels

Volunteer Honoree

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Polycystic kidney disease (PKD) runs in Katherine Michiels’ family. She has it, her father had it and others in her family have it. But it was only after her daughter MaryKatherine, who is also being honored at the 2017 Gratitude, was diagnosed at the age of 13, that she decided she needed to learn more about PKD. MaryKatherine is now 21 and a strong supporter of the PKD Foundation but, back then, neither Katherine nor her daughter knew much about the disease. When Katherine herself was diagnosed, before her daughter was born, her doctor had told her that she had nothing to worry about until she needed a transplant.

PKD affected her daughter differently. At such a young age, MaryKatherine already had more cysts than Katherine did when she was first diagnosed in her late 30’s. “It’s such a huge misconception to think PKD will affect you exactly how it affected someone else in your family,” ponders Katherine. She started researching PKD online to look for answers and that is how she found the PKD Foundation.

Katherine first contacted the PKD Foundation San Francisco Chapter and, shortly after, attended the PKD National Convention in Chicago with her daughter and other family members. “It was attending the Convention that got us more involved with the PKD Foundation,” Katherine says. “We met a lot of families there. We also met Valen Keefer, who had just published her book. She was young and she impressed us. I thought it would be good for my daughter to see someone so young being so proactive about her disease.”

Katherine and MaryKatherine then started going to Chapter meetings regularly and participated in advocacy events on the Hill. Together, they started and coordinated the first San Francisco Walk for PKD, which continues to raise money each year to support research, provide education and resources to those affected by PKD, and amplify the voices of PKD patients through awareness and advocacy. Katherine and MaryKatherine coordinated the San Francisco Walk for the first three years since it started in 2009. “For the first three years in a row, MaryKatherine received the award for being the ‘highest money raised’ fundraiser for the San Francisco Walk,” Katherine says.

After MaryKatherine’s diagnosis, Katherine decided to be very proactive about her health care and her daughter’s. She got MaryKatherine enrolled in a clinical trial and, together with other PKD patients, she persistently advocated for better care for her and her daughter’s condition. In 2014, Katherine and PKD parents Michael Sherrard and Chris Fede, who she met through advocacy efforts with the Foundation, worked together and founded a PKD clinic at the University of California San Francisco (UCSF) with the support and vision of Chi-Yuan Hsu, M.D. Dr. Hsu selected Meyeon Park, M.D., who is also being honored at Gratitude, to head the clinic. Today UCSF’s clinic is truly a center of excellence for PKD care that includes nutrition, cardiology, nephrology and other alternative medicine, such as acupuncture. “Dr. Park is amazing! She is a doctor who can explain our disease, advocates for our care and research, and knows how to talk with patients about PKD,” says Katherine.

Katherine’s advice for someone just diagnosed with PKD is to “become a part of the PKD Foundation network. Meeting others with a PKD history and experience, consulting the Foundation’s resources and joining the Foundation team to advocate will make you feel better.” She hopes that more people who have PKD will get connected. “We know that having a support system and sharing your story really benefits patients who have a chronic disease like PKD.”

We are glad to honor and recognize Katherine for her volunteerism and her efforts to advance the mission of the PKD Foundation to improve the lives of patients living with this disease. “Being honored at Gratitude is something I am sincerely proud of. PKD families are very fortunate to have a foundation devoted to finding a cure for our disease”. She is planning to share the honor with many who have supported her and her daughter throughout the years. “I look forward to bringing people who have worked with me and who know about my PKD struggle to the Benefit. It’s a privilege to share this honor with them.”