PKD parents, patients, researchers and advocates gathered together in Chicago in early February for the first meeting of the newly formed PKD in Children Council. As the PKD Foundation seeks to give hope and serve those affected by PKD, this Council was created to better understand what the community wants and needs, and to raise awareness through elevating the voice of families that have young children affected by ARPKD and ADPKD. Kari Lusby, a Council member, PKD parent and President of the Crusade for Cures Foundation, recaps the weekend to give you an inside look:
Our agenda kicked off with an update from PKD Foundation CEO, Andy Betts, who set the stage for the meeting and shared hopes for the PKD in Children Council as we move forward. Following those opening statements, the PKD Foundation team allowed plenty of time for introductions and an opportunity for us Council members to share our stories. I was personally very touched by all who shared.
Our Council has a wide variety of members, including mothers who lost their angels to ARPKD at birth or after a beautiful life ended far too soon. ARPKD and ADPKD parents, as well as patients both pre- and post-transplant who continue to battle the disease are also among our ranks. We also enjoy the gift of having kidney and liver medical doctors and researchers participate in the Council. Although this diverse group of people are affected by PKD in so many different ways, we share one thing in common: we all love someone that has or had PKD, and we all want to end it.
Throughout the day, we were asked to consider three priorities: research, awareness and advocacy. These are important priorities for the PKD Foundation and the team wanted to understand which area we give the most importance. Based on the diverse group of people and our experiences with PKD, we offered varied feedback and a consensus that all three priorities are connected and critical to our progress.
One of our most engaging sessions was a panel discussion led by PKD Foundation Chief Scientific Officer, Dr. David Baron, Ph.D., and our Council medical doctors and researchers. We discussed a number of different issues affecting the PKD community, as well as the importance of participating in medical research. The panel members shared a very strong message about the need for a better system to organize PKD patient information to facilitate both medical research and community participation. This would greatly expedite the advancement of treatment options and get them into the hands of patients more quickly.
For me, the highlight of our meeting was the chance to connect with my fellow PKD warriors in a place where we could encourage and inspire each other to keep going and continue the fight. I think the PKD Foundation got it right. PKD doesn’t have a chance with this group of mamas, patients and friends organized with a common mission.
I am grateful to the PKD Foundation for creating this Council and for the opportunity to serve alongside such amazing people.