Published on April 5, 2022 | Launched in 2020, the Advocacy Champions Network (ACN) is an exclusive community of patients, family members, and clinicians dedicated to improving the lives of people living with PKD. The inaugural ACN class consisted of 36 members from 22 states. Since then, the ACN helped connect advocates to their local legislators, including helping set 33 Capitol Hill meetings in 2021. To get to know our ACN members a little more, we’ll be sharing their path to advocacy stories in a new series. Today, we’re highlighting ACN member Alix Piccirilli.
What does being an advocate for the ACN mean to you?
It’s so important for me to be an advocate not only for my son but also for others with PKD. I always try to engage others and explain why I am passionate about PKD, how they can help, and get them excited about collaborating on a common goal. Whether it’s fundraising, the ACN, working with doctors, or supporting other families, I want my son to understand the importance of working with others to make strides toward the common good.
What is one piece of advice you’d give to aspiring advocates?
Try it! There are so many ways to get involved and advocate for PKD causes, you never know which ones you’ll enjoy the most, how much fun they can be, or who you’ll meet! You may also discover a new talent or skill but you won’t know until you try.
How has the PKD Foundation, the ACN, or the PKD community affected your life?
Volunteering with the PKD Foundation has really helped me feel like I am part of a larger community working toward the same goal. I’ve met so many amazing people through the Foundation and it’s given me a way to channel my energy into something positive.
Are there any resources that have helped you throughout your PKD journey?
These could include websites, blog posts, social media groups, books, movies, songs, etc. I’m part of the PKD in Children Parent’s Chapter and the ARPKD Facebook groups.
Can you tell us about your PKD journey?
Our son was five when I asked his pediatrician for advice about bedwetting. After referrals and testing, doctors told us he had ARPKD. I’d never heard of PKD and I didn’t know anyone who had it; I was shocked and devastated. We traveled to D.C., to meet with Dr. Guay-Woodford who was wonderful and helped explain our son’s condition. He is now nine and doing very well. Since his diagnosis, I’ve looked for ways to volunteer, fundraise, and connect with other families. The PKD Foundation has been a great way for me to get involved and feel like I’m helping work toward finding treatment and a cure for my son and others impacted by this disease.