5th Annual Florida Family Leader Network Summit

Leveraging Literacy Tools

Sep. 14-16, 2022

Tampa, FL

About FFLN

We are delighted to be back in person this year. For those of you unable to travel, we miss you but hope that you will be just as engaged virtually. Technical help will be available before and during the summit.

The overarching goal of the FFLN is to break down the silos across systems that hamper care for our children and youth with special healthcare needs (CYSHCN). We aim to do this by:

  • Building a Florida network of family/youth leaders, champions (those providers and professionals who support patient/family engagement,) and the next generation of emerging professionals.
  • Building leadership skills capacity among family/youth leaders, and professionals/emerging professionals.

This year’s theme, “Leveraging Literacy Tools,” will focus on innovative ways to be more inclusive and equitable. Additionally, we want those of us who serve CYSHCN  space to connect with one another. Networking is a core function of what the FFLN does.  Many of you have been part of the FFLN since the first summit in 2018. Some of you are new to the FFLN. We want to honor the work you do and give you strategies to support your role. Sarah Goldman will share her journey to becoming a self advocate and champion. Mimi Graham will help us redefine our goals in response to life’s challenges and opportunities. Nicole Sutton will introduce us to the concept of visual literacy and Laura Guyer will provide literacy tools and strategies as we connect with one another via social media. Linda Starnes will give us a historical perspective on the language of inclusion and Denean Greene Rivers will help us to develop our personal diversity equity inclusion and belonging recipe. As this is our 5th summit, Danita Gainer will facilitate a reflection on past accomplishments of the FFLN and guide us as we strategize for the future.

We are grateful to Children’s Medical Services Title V Office of Children and Youth With Special Healthcare Needs for their support of the FFLN.



The University of Florida Pediatric Pulmonary Center (UFPPC) is funded by a grant from the Maternal and Child Health Bureau (MCHB), a division of the Department of Health and Human Services.  MCHB programs embrace an interdisciplinary approach to teach the core values of family-professional partnerships (http://pulmonary.pediatrics.med.ufl.edu/education/training-program/). The UFPPC collaborates with other MCHB funded programs in Florida - the University of Miami Mailman Center Leadership Development in Neurodevelopmental Disabilities (LEND) and the University of South Florida School of Public Health Center of Excellence in Maternal and Child Health Science and Practice. We also collaborate with our state Title V partner, Florida Children’s Medical Services (CMS) Division of Children and Youth with Special Healthcare Needs.

At their annual meeting in 2016, the MCHB programs, along with representatives from CMS and other stakeholders from community agencies and clinical programs, met to discuss family leadership in the context of family-professional partnerships. The Florida Family Leader Network (FFLN) was an outcome of that meeting.  In September 2018, 80 participants, including 45 family leaders, self-advocates, their champions and a number of emerging professionals met in Orlando at the inaugural summit of the FFLN. We have continued to meet each year since 2018. We did not let the pandemic slow us down. The FFLN is unique because it brings together family leaders, self-advocates and champions from community, healthcare and academic settings.

We very much look forward to meeting you either in person or virtually!



Family Leaders: parents/caregivers of children with special healthcare needs who are using their lived experience taking care of their own children to now advocate for other parents/caregivers/children in either paid or volunteer positions.

Self-Advocates: youth with special healthcare needs who are advocating for themselves and others. 

Champions: those professionals who support family-professional partnerships.

Emerging Professionals: the next generation of professionals who support CYSHCN and will carry on the work

It is important to bring all the constituents together because family leaders and self-advocates cannot do this work on their own.