PWSA | USA Board of Directors Member Spotlight: Kathryn Lucero

Board of Directors Member: Kathryn Lucero
Board Role: Member
Years on the Board: 4.5

What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors?

My first connection with the Prader-Willi community was in 2014, when my son, Ronan, was born. My mom initially reached out to the Association, hoping to find resources, support, or guidance for our family, but unfortunately, we did not hear back from anyone. About five months later, feeling desperate for information and connection, I reached out myself. That call connected me with Tammie Penta, who took the time to speak with me while she was working and became one of my closest friends in the PWS community. I will forever be grateful that she answered my call when I needed someone most. As I became more involved in the PWS community, Jim Koerber and I went on to establish the Prader-Willi Association Chapter of New Mexico so that other individuals and families in our state would have access to the resources and support we had needed so desperately. My involvement with the Association continued even after I left New Mexico, as I remained committed to serving as both a Chapter Leader and Parent Mentor. In 2022, I was approached about the possibility of joining the Board of Directors. I was incredibly honored to even be considered for such an important role. I saw serving on the Board as an opportunity to use my voice and my experiences as a parent to advocate for families, strengthen the support available to them, and help ensure that others within the PWS community would have someone to turn to when they needed it most.

What do you find most meaningful about serving on the Board, and what excites you most about the work ahead?

The work we do as a Board of Directors is truly a collaborative effort alongside the PWSA | USA staff and various committees. Together, we help evaluate and approve new ideas, support programs and initiatives already underway, and carefully review the budget to ensure the Association can continue to grow while meeting the evolving needs of our community. The growth of PWSA | USA over just the past five years has been incredible. We have seen tremendous progress in programs, advocacy, fundraising, and research. I remember when Ronan was a baby, thinking it might be decades before we would see meaningful progress toward medications specifically for individuals with PWS. Now, we are seeing medications become available, with several others progressing through clinical trials. As a parent, witnessing that progress is incredibly meaningful and gives me so much hope for the future. One of the most exciting parts of serving on the Board is having the opportunity to be involved in decisions that can make a difference across our entire PWS community. I am incredibly proud of how far we have come, but I am even more excited about where we are going. I see tremendous potential for PWSA | USA and believe the coming years will bring even more opportunities to strengthen our community, support families, advance research, and advocate for individuals living with PWS.

Please share a bit about your professional background and how it supports your role on the Board.

I received my Bachelor of Science in Exercise Science, originally thinking I wanted to work with children as a personal trainer. I soon realized, however, that the personal training field was highly saturated and that I wanted to expand my education and find another way to help people. At the time, I was working with a Health & Wellness Coach who had a degree in Social Work, so naturally, I assumed that was the path I needed to take to become a Health & Wellness Coach myself. Long story short—and one Master’s Degree in Social Work later—I discovered that you do NOT, in fact, need a degree in Social Work to become a Health & Wellness Coach! By the time I figured that out, though, my education had taken me down a path I never could have anticipated. I had the opportunity to work in hospice, as a Social Worker in a long-term nursing facility, as a Case Worker with a guardianship agency, and eventually as a Case Manager for The ALS Association in New Mexico. Looking back, I believe every one of those experiences prepared me to become a stronger advocate—not only for Ronan, but for the PWS community that I have grown to love so deeply. And my original dream of becoming a Health & Wellness Coach did eventually come full circle. I received my certification through the Institute for Integrative Nutrition, and today I feel that the combination of my education and professional experiences gives me a unique perspective and knowledge base that I can bring to my work on the Board. Interestingly, after having Ronan, I began to wonder if there had been a reason I was drawn to Exercise Science and developed that particular knowledge base long before I knew anything about Prader-Willi syndrome. Over the years, I have come to believe that, as parents, many of us discover that experiences throughout our lives have quietly given us tools we never knew we would need. When our children come into our lives, we find ways to draw upon those experiences, our knowledge, our strengths, and even our challenges to become the caregivers and advocates they need us to be.

Outside of your Board work, how do you enjoy spending your free time?

In my free time, when I can find it! I enjoy spending time with my family and friends, traveling and camping, exercising, crafting and decorating, and learning about health and wellness. I also enjoy cooking, a good glass of wine, and taking on creative projects around my home. Most of all, I love spending time with the people I care about and finding reasons to laugh along the way.

Where do you currently live, and what do you enjoy most about your community?

I may be a little biased, but I believe I live in one of the most beautiful places in the country. I live in the northern part of Colorado Springs, where we are fortunate to have wildlife visit our backyard almost every day—and I never get tired of seeing it. We also regularly hear what I like to call the “sound of freedom” as fighter jets fly overhead, with several military installations and the U.S. Air Force Academy nearby. Beyond the natural beauty and unique character of the area, one of the things I appreciate most about living in Colorado is the incredible resources available for individuals with Prader-Willi syndrome and their families. As a parent, I feel extremely fortunate to live in a state where our PWS community has access to such wonderful support and resources. Colorado Springs truly feels like home, and I am grateful for everything this community and state have to offer.

Please tell us a little about your family or the people who are most important in your life.

I have been married to my husband, Armando, for just over 15 years, and we both spent the majority of our lives in New Mexico. We sometimes joke that our household is divided because we attended rival universities—although neither of us is a huge sports fan, so thankfully it hasn’t caused too much conflict! In 2014, our family grew when our son Ronan was born. Ronan was diagnosed with Prader-Willi syndrome, which began a journey for our family that we never could have anticipated. After moving to Colorado in 2016, we knew that we still wanted to grow our family, and in 2022, we were incredibly fortunate to welcome our son Julian through adoption. Throughout every chapter of our lives, we have been surrounded by an amazing support system of family and friends, both here in Colorado and back home in New Mexico. We will forever be grateful for the love and support they have given our family throughout the years and continue to give us today.