Our nationwide Chapters are a wonderful way to connect with your local PKD community! New York City Chapter Co-Coordinators Sarah Giller and Meg Munits know this best, and were excited to share how getting involved impacted their PKD journeys:
PKDF: Tell us a little bit about yourselves.
Sarah Giller (SG): I was born in the Bronx and my husband and I have always lived in the NYC area. No matter how crazy it gets, it’s my hometown. I have two children who are in their thirties. Both of them live and work in the city.
Meg Munits (MM): I’ve lived in New York City for the past 19 years. I recently moved with my husband and three young boys to Dobbs Ferry, N.Y.,, 30 minutes outside the city.
PKDF: What is your connection to PKD? What has your history with the disease been like?
SG: I was first diagnosed with PKD when I was in my forties. I had no idea that this disease was present in my family, nor did I have any idea of what it even was. My mother died of what I was told was kidney disease. This was in 1961 and not too many people could diagnose PKD back then. My symptoms progressed until I had a transplant in 2007.
MM: My 7-year old son Dov has ADPKD, which was diagnosed at his birth. His kidneys were enlarged in utero, which according to literature at the time, predicted an early onset of symptoms. Like any pregnant woman given a potential diagnosis for her baby, I prepared for the worst. He was born with large cystic kidneys but has yet to experience many symptoms. One of the biggest lessons I’ve learned about PKD is that it can affect people differently, both physically and emotionally, and each family has a different experience. Even though I would like to predict a disease trajectory to ease my mind, I have learned to deal with it as it comes. I’m comforted by educating myself on the latest research, speaking with others in the community about their stories, and sharing discoveries that lie outside the range of research.
PKDF: How did you first get involved with the PKD Foundation?
SG: I had no information at all about PKD until I discovered the Foundation’s website. I was learning about PKD but wasn’t really involved until I went to a Chapter event and talked to a Foundation member attending from Kansas City. They told me about the Chapters in and around NYC and made me want to do more than read about it online.
MM: I discovered the Foundation when I was searching online for guidance and information. I immediately connected with Michele Karl (the guru champion of the PKD Parent Chapter) and have been riding the wave ever since. The Foundation has done a great job at expanding its awareness and knowledge of ADPKD and ARPKD and becoming more inclusive of the children and families dealing with the disease.
PKDF: What made you decide to take a leadership role in your Chapter?
SG: NYC Chapter leadership was changing and an opportunity to be a Chapter leader opened up about six years ago. About three years ago, Meg decided to become more involved and I am extremely happy and grateful that she did. She quickly became our co-coordinator and the driving force behind our monthly meet ups.
MM: In 2016, I got to know Sarah at a meet-and-greet she hosted at a coffee shop. I was deeply inspired by her dedication and commitment to the NYC Chapter and by her ambition to outreach and educate the local PKD community. I joined forces with her immediately, and our different perspectives (hers as a transplant recipient and mine as a caretaker) collectively guide the direction of the chapter.
PKDF: Tell us a bit about your local Chapter and how members engage with their community.
SG: NYC has a Walk for PKD every year along the Hudson River in Manhattan, which is a major fundraiser. We’ve had our second Comedy Night to raise money for research, which was also a great success. What I’m most proud of, however, is our monthly meet ups. We’re going on our second year, and from the feedback we’ve gotten, it’s been a positive experience for the people who attend. Sometimes we have speakers and sometimes the meeting is all about sharing or listening, laughing and crying. In addition to the meet ups, I hope to do more outreach to underserved populations and an educational seminar or two to get new information and possible treatments out there.
MM: We have been blessed with the generous support of the Rogosin Institute, which provides the space for our meet ups and also two co-hosts: social worker Barbara Desiderio and nephrologist Dr. Irina Barash, who graciously share their time and insight with the group. Our mission is to provide a space where people who are affected by PKD can share their journey. There is always something to learn from one another, no matter where one is in the PKD lifecycle. We have members who come every month, and some who come when they can or when they want. We keep it interesting by providing a speaker every other month. We’ve even had members present on various topics, including tolvaptan, Mind-Body-Spirit-Kidney connection, PKD Connect Conference recap, and Financial Planning for PKD.
PKDF: How would you encourage others to get involved with their local Chapter?
SG: What helped get me started was speaking with a real live person about how PKD affected and still affects my life. Learning all you can about this disease is an important beginning, but it’s only the beginning. Reaching out and hearing about what other people are going through and how they deal with all the issues that come up with PKD is where the real learning takes place. That’s why I like to focus on outreach as much as possible. Our Chapter events enable people to come together, talk and share as much or as little as they are able.
MM: From a Coordinator’s perspective, I would encourage people to reach out to their local Coordinator and express not only their interest in the Chapter, but also their ideas, talents and skills. When a relationship is established between the Coordinators and Chapter members, the involvement grows organically. We have members who got involved beyond the meet ups by volunteering at the Walk and the Comedy Night fundraiser, but this evolved after they attended the meetings for a while. It deeply inspires me when members have their own grassroots desire to turn their talents into awareness and fundraising efforts. From annual fundraisers to outreach campaigns to YouTube channels to DIY events, I love the diverse ideas and talents that they bring to the community. I feel like we are at a monumental time in PKD history, not only with the record number of research projects and drug trials being conducted, but also by the shift in the way families are more open about the disease. This makes my heart swell for my little PKD warrior, as I am comforted by the wise words of Bob Marley, “Cause every little thing’s gonna be alright.”
If you’re interested in volunteering with your local PKD Foundation Chapter, sign up here to get involved!