Published on July 14, 2022 | With the Walk for PKD being our biggest awareness event, Walk for PKD Ambassadors are an essential role. They’re responsible for planning and executing their local Walk for PKD with support from PKD Foundation staff. This volunteer role raises important financial support and plans an event that brings their local PKD community together. Their contribution helps us as work toward realizing our vision of ending PKD. To dive into this role more, Felicia Berenson-Reinhardt is sharing what it’s like to be a Walk Ambassador.
What brought you to the PKD Foundation?
When my mom was diagnosed with PKD in 2015, after going into renal failure, we were shocked. We knew nothing about a family history or anything. And I felt incredibly helpless. In 2019, I found the Hudson Valley Walk for PKD and finally felt like I had a way to do something to help.
Of all the volunteer options at the PKDF, what made you become a Walk for PKD Ambassador?
I saw a post on one of the social media pages stating that the Hudson Valley Walk needed an Ambassador. I was worried that if I didn’t step up, the Walk would not take place. Unfortunately, we lost my mom to complications from PKD at the end of September of 2021, and that strengthened my need and drive to do more.
What’s your favorite part about being a Walk Ambassador?
I’ve only been in the position since June, so I am still learning everything that the position entails. So far, I’m really enjoying meeting other members of the PKD community and working with Foundation staff.
Do you have a favorite Walk memory?
We did our first in-person Walk for PKD in 2019, and it was an incredible experience. After being diagnosed, I felt very alone. Going to the Walk and feeling like a part of a community for the first time, made me feel supported.
Why is it important for people to raise awareness of PKD?
I think that it’s important for people to raise awareness about PKD because it still feels like a relatively unknown disease. I didn’t know anything about it prior to my mom’s diagnosis. And I don’t think I’m alone in that. There still isn’t a cure for PKD and even the treatment options are limited. At least we have Jynarque. But by raising awareness of the disease, maybe there will be more research done. By raising awareness until there’s a cure, those of us PKD warriors, either personal or on behalf of family, can know that there is a network of support. No one will have to feel alone.
What advice do you have for those who want to become a volunteer?
Just do it. I was a bit apprehensive about the time commitment, but it’s been such a rewarding experience.
Interested in becoming a Walk for PKD Ambassador? We’re recruiting for the following communities:
- Chicago – Looking for a Co-Walk Ambassador
- Las Vegas
- North Texas
- San Antonio — Recruiting for 2023
- South Florida
- St. Louis
While not everyone has the time to become a volunteer, we hope you’ll just us at your local Walk! Register today at walkforpkd.org.
The Walk for PKD is support by our generous sponsor, Otsuka America Pharmaceutical, Inc.