Linked Together

In this episode, our host Molly Martzke and guests Bailey Perez and Vicki Hunting delve into the critical importance of family engagement in revolutionizing the genetic healthcare delivery system. We discuss how active family involvement can lead to more patient-centered, equitable, and effective healthcare practices. Tune in to hear expert insights and real-life examples of how supporting family...

In this episode, host Vicki Hunting and guests Bailey Perez and Natasha Bonhomme explore the pivotal role of data and the importance of asking the right questions to drive system change. By leveraging accurate data and insightful inquiry, we can uncover root causes and design effective, sustainable solutions. Join us as we discuss how data-driven approaches are transforming systems and creating im...

In this episode, host Bailey Perez and guests Molly Martzke and Marianna Raia highlight the crucial role of lived experiences and storytelling in driving system change. By sharing personal narratives, we can illuminate systemic issues and inspire actionable solutions. Join us as we delve into powerful stories that demonstrate how lived experiences can catalyze meaningful, lasting transformation.

In this episode, host Natasha Bonhomme and guests Vicki Hunting and Marianna Raia  discuss the power of convening and bringing diverse groups together to drive system change. By fostering collaboration and dialogue among stakeholders, we can create innovative solutions and build more resilient, inclusive systems. Join us as we explore inspiring examples of how collective action leads to meaningful...

In this episode, host Marianna Raia and guests Natasha Bonhomme and Molly Martzke explore the transformative impact of authentic partnerships in the genetic healthcare delivery system. By fostering genuine collaboration between families, healthcare providers, and communities, we can create more inclusive, effective, and patient-centered care. Join us to hear expert insights and success stories on...

Sharing stories is often one of the first things that families are asked to do. In today's episode we discuss how it makes you feel to share, very personal and sometimes very difficult stories. How when you are re-telling your story or hearing somebody's story, you're right back in that moment. How there's an emotional cost to that, but also there's power in that, too. 

I'm so excited to have you along today for an important discussion. We will be discussing the value that mentors and leadership training played into what we are doing today. How this piece is crucial in the development of family leaders as they engage in systems change.

Join us as we wrap up season one. One of the most frequent questions that we are often asked is, how did you get into this field. We share how we get started and where we see ourselves going from here. 

We are glad that you can join us as we discuss why we do this work. Why we continue to support other families as we work toward system change. Why each of us shows up each day even though the work is hard and hearing other struggles brings up some of our own. 

We are so excited to have you  joining us today as we talk about what that perfect system looks like for us. What we wish would have happened, what worked for us, and where we see opportunities to make the family journey better.

Join Molly Martzke along with this season's co-hosts Sarita Edwards, Linda Starnes, and Marisol Rose as they introduce themselves. Learn about them and what has brought them to this work, as they explain what it means to them be a family leader in systems change.

Join us as this season's co-hosts delve into the concept of grief today. We will discuss how each of us perceives the notion of grief and how we've processed this through the years. 

Join us as this season's co-hosts talk about where we find support. We will explore how you build community and make those connections that are vital in the successes of each of our journeys. Support comes in all forms and places, whether it's medical, parent-to-parent, families, friends. But today, we're really going to talk about the importance of parent to parent connections. 

Join us as this season's co-hosts delve into expectations today. These expectations can be influenced from the perspective of the medical community, the educational community, and from society at large. We will explore how the expectations of your child with special healthcare needs has affected our personal expectations and the way we've viewed our child. 

We invite you to join us as we talk about the changing dynamics of friendships and relationships. We explore how things change with friends and family, and how you often find that whole new group of friends that support you.