Published on June 7, 2022 | In order to advocate for our community, we formed the Advocacy Champions Network (ACN). The ACN connects advocates to their local legislators, helping further PKD-centered legislation. Each member has their own unique path to advocacy. Continuing our ACN spotlight series, today we’re highlighting ACN member Lainie Esquivel.
What does being an advocate for the ACN mean to you?
Lainie Esquivel: I think everyone diagnosed with PKD processes it in their own way. For me, I’ve always struggled with accepting what the future holds, knowing how PKD has impacted other family members. By taking an active role in advocacy efforts, I feel that I’m investing my energy in a positive way and contributing to a better life for future generations.
What are you most excited to do as an ACN Champion?
Lainie Esquivel: In my short time as an ACN Champion, I’ve loved learning more about the legislative process and how I can become a more active participant to advocate for the PKD community. Connecting with my representatives has always felt incredibly daunting and intimidating. With the support of my fellow ACN Champions, I wrote 10-15 holiday cards for members of Congress near and far. I’m so excited to see what conversations arise this year!
What is one piece of advice you’d give to aspiring advocates?
Lainie Esquivel: Start small! Your voice matters! Advocacy can be a fulfilling way to build your personal community of people touched by PKD.
At what moment did you realize you wanted to be an advocate?
Lainie Esquivel: I submitted a Voices of PKD story last year and was invited to submit a recording for a research summit this summer. It was a huge step out of my comfort zone, but I felt so supported by the PKD Foundation. As I explained my story and gave my perspective into what might help patients like me, something sparked within me. I knew I had to continue pursuing these opportunities.
Are there any resources that have helped you throughout your PKD journey?
Lainie Esquivel: Recently, it’s been valuable for me to participate in various Facebook groups within the PKD community, including tolvaptan support groups. While I have a wonderful relationship with my nephrologist, there is something so valuable about hearing someone’s day-to-day experience.
Can you tell us about your PKD journey?
Lainie Esquivel: I was diagnosed with PKD in my early 20s and I’m the third generation in my family, as far as we know. Despite that, It’s been so encouraging to see the positive progress in each generation. My grandfather was diagnosed late in life and needed dialysis and my father received a living donation from my mother. Now, I have the opportunity to consider tolvaptan for treatment. Although I’m sometimes disheartened by the complications I’ve experienced, most recently a near-septic kidney infection and preeclampsia during my pregnancy with my daughter, my heart is so full for the opportunities the future holds. I’m loving being a new member of the ACN. I love building relationships within the PKD community and working together to improve outcomes for current and future patients!
I love what Advocacy Champions Network is doing to help raise awareness of PKD. Every single person involved in this effort will help so many others who are dealing with this disease. Keep up the good work that you do!