Pathways to Family Leadership: Turning Lived Experience into Collective Impact

Authors: Jana Villemez, Family Engagement Consulting Services, LLC, and Board Member, National Family Association for DeafBlind (NFADB); Donia Shirley, President, National Family Association for DeafBlind; Carolyn Bradfield, Community Engagement Coordinator, Ava’s Voice; Katie Sacra, Director of Family Programs, Global Foundation for Peroxisomal Disorders; and Edgenie Bellah, Affiliate Coordinator, National Family Association for DeafBlind, and Texas Deafblind Project

Editor’s Note: The format for the word “deafblind” is used differently throughout the article to reflect cultural identity, organization names, and authors’ preferences.

Introduction     

Jana Villemez

If you’ve ever been hiking or taken a long road trip, you may know the joy of choosing a path that matches your pace, your energy, and your goals. Sometimes it’s a gentle, scenic trail where you can take your time; other times it’s a challenging climb that pushes you to grow. Along the way, you might come across others who are on their own journeys—travelers with unique destinations, stories, and reasons for being on the trail. 

For families who have loved ones who are deafblind, blind, or have low vision, the journey is deeply personal. There are moments of solitude and reflection, and there are places along the way where paths converge—where families walk together, share their stories, and gather strength for the next stretch. 

Family leadership is at the heart of the growth and strength of the deafblind, blind, and low vision communities. Yet, many family leaders tell us they never thought of themselves in that way—nor would they have “applied for the job.” While we continue to use the term, our understanding of family leadership extends far beyond influencing change at state or national levels. It begins with the deep love a family has for their child, which often sparks personal leadership for change and grows through connection with others. For some, that voice expands outward to impact systems and policies; for others, leadership is simply the quiet strength of showing up for their family and community. Many families step into leadership without realizing it, often discovering this identity at a “bend in the road” where they meet others with similar experiences. Each pathway to family leadership is as unique as the individual walking it—yet all benefit from opportunities to learn, grow, and walk alongside others.

Almost a year ago, inspired by our work with the National Association for Family, School, and Community Engagement (NAFSCE), the National Center on Deafblindness, and several state deafblind project family engagement coordinators began deeper conversations with family leaders from across the country. We wanted to learn from their journeys, understand what fueled their passion, and discover how they grew into leadership. 

Our conversations were guided by the same principles found in the Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind report, particularly Priority 8: “Amplify diverse family voices, inclusion, and leadership at all levels (e.g., classroom; local, state, and national; services, agencies, policy, and legislation; technical assistance systems; and national organizations). Nothing about us without us.”

We know that when families are supported to grow as leaders—meeting them where they are, honoring their values and cultures, and building on their strengths—they are empowered to create change for themselves, their children, and others.

Jana Villemez, a leader who uplifts families, sharing wisdom, connection, and community through her work.

Our Working Definition of Family Leadership

Family leadership is a dynamic and multifaceted role that transforms personal experiences into collective action. By championing not only for their own family members but also for broader systemic changes, family leaders play a crucial part in advancing the rights and well-being of individuals with disabilities.

For our purposes in this article, we’re using a definition that reflects the heart of our communities: family leadership is the active, empowered role family members take in shaping the voice and vision for their children. It grows in partnership with individuals with disabilities, who bring their wisdom and leadership to the shared journey. Leadership can show up in many ways—through personal leadership for change on behalf of a loved one, building connections within the community, or working to improve systems and policies. Like a traveler leaving markers for others to follow, leaders help create clearer, more navigable routes for those who come after them. At its core, it’s about relationships, belonging, and using our voices to create positive change.

Starting with Connection: Building Purpose through Community

Donia Shirley

My journey into family leadership began with something very simple—a desire to connect. I wanted to meet other families who understood our experience. That sense of shared understanding became the foundation for everything that followed.

When our child was just six weeks old, we received a preliminary diagnosis of CHARGE syndrome and deafblindness. We were handed a list of worst-case scenarios. Grief overwhelmed me, and I couldn’t imagine how we would move forward.

Meeting another parent of a child with CHARGE through the CHARGE Syndrome Foundation was a turning point—a rest stop on an uncertain road—a rest stop where encouragement awaited, understanding, and the reminder that we were not alone.

Social media introduced me to more families—across the DeafBlind, blind, and low vision communities—and reminded me that, while the road ahead was uncertain, it didn’t have to be walked alone.

Our state DeafBlind Project and Family Engagement Coordinator invited us to webinars, support groups, and Family-to-Family (F2F) calls. Each opportunity reinforced that we were part of something bigger—a network of families navigating unique but connected journeys.

With encouragement from family leaders and professionals, I stepped into leadership roles. I became a Family-to-Family Communities facilitator, a liaison for the CHARGE Syndrome Foundation, a family advisor at our local children’s hospital, and later joined the National Family Association for DeafBlind (NFADB) board, eventually serving as secretary, vice president, and now president.

For me, leadership isn’t about having all the answers—it’s about showing up, making connections, and ensuring that others feel less alone. Every act of connection matters, and together they build stronger, more navigable paths for everyone who comes after us.

Donia Shirley and her son Jaxson radiate strength and connection, showing the heart of family leadership rooted in love, advocacy, and hope.

Finding My Voice: From Personal Struggle to Community Leadership for Change

Carolyn Bradfield, Community Engagement Coordinator, Ava’s Voice

Five years ago, I found myself standing at a crossroads I dreaded—a fork in the road I hadn’t planned for, but one that would ultimately lead me into the heart of the disability community and awaken a sense of leadership I didn’t know I had.

Living with Usher Syndrome Type 2a, a rare genetic condition causing progressive hearing and vision loss, has taught me to adapt. But nothing prepared me for the day in 2020 when I realized I could no longer drive safely. The simple act of getting my three young children to and from school became a source of constant anxiety.

When I asked our school district for help—transportation or any reasonable accommodation—the answer was always no. Because the disability was mine, not my children’s, the district felt no legal obligation to assist us. That crushing realization lit a fire in me. I began reaching out to agencies, leadership for change groups, and elected officials. Most were kind, but no one seemed to know how to address our situation.

I soon discovered I wasn’t alone. Other parents with vision and hearing loss shared similar experiences, and some had resorted to homeschooling, not by choice but by necessity.

In 2023, I filed a civil lawsuit against our school district. Each small legal win has felt like a step forward—not just for my family, but for countless others who’ve felt unseen and unheard.

I never would have called myself a “family leader” in the past. For years, I hid my disability and knew no one else with Usher Syndrome. Everything changed when I began meeting others with my diagnosis. I found a community. I found support. Most importantly, I found my voice.

Today, as the Community Engagement Coordinator for Ava’s Voice, I work to uplift youth and young adults with Usher Syndrome and their families. Sharing our stories creates a community rooted in empathy, resilience, and action—and ensures no family has to walk this path alone.

Carolyn Bradfield and Ava Bullis celebrate encouragement, resilience, and the power of believing in themselves.

From Isolation to Impact: My Path to Family Leadership

Katie Sacra

I never imagined my life would lead me to family leadership in the rare disease community. I’m the mom of a 25-year-old son with complex medical needs and multiple disabilities, including deafblindness caused by a peroxisomal biogenesis disorder, Zellweger Spectrum Disorder (PBD-ZSD)—a rare, genetic, and fatal disease affecting about 1 in 50,000 births.

My path didn’t begin with a diagnosis—it began the day my son was born. His diagnosis came nearly two years later, after a long and isolating search for answers. Even with my background in healthcare administration, I quickly realized how few resources existed for families like mine. And the search didn’t end there—it would take nearly three more years before we were able to identify the specific type of peroxisomal disorder he had. It would be another six years before I met, in person, another child living with the same rare disease as my son.

Like many parents of children with disabilities, I’ve worn countless hats—caregiver, advocate, bridge-builder, teacher, and more. Some I never wanted, some I struggled to accept, but all shaped who I’ve become. I fought for my son’s educational rights, built networks of specialists when no one else would, and supported other families who felt as lost as I once did. Along the way, I discovered a passion for bridging gaps between healthcare professionals, educators, and families—helping each side better understand the other so children like my son could thrive.

A turning point came when my son’s school refused to provide training to support him. I enrolled in formal training to become a deafblind intervener as the only parent in a class full of professionals. That experience, along with years of mentorship from an attorney who taught me to channel emotion into strategy, deeply shaped how I approach advocacy and leadership.

Over time, professionals began referring families to me, recognizing the impact of my efforts. I found myself taking time off work to support families I had never met before as they shared their powerful stories and the barriers they faced. Each story lit a fire in me, strengthening my commitment to helping families navigate these challenges.

Later, at a Deafblind Symposium, I heard the term “family leadership” for the first time and realized: this is me. I wasn’t just doing what needed to be done for my son—I was building something that could help others, too. By then, I had already been selected as a parent leader in a variety of ways—from serving as a panelist at events and advisory boards to representing my state of South Carolina in a pilot project for family support. I had even been nominated by my son’s attorney and received a prestigious award from Protection and Advocacy for People with Disabilities for my parent advocacy. Yet none of those titles or recognitions truly captured what I felt called to do. The term family leadership finally resonated because it reflected more than just me as a parent. It spoke to the power of families supporting families, and the responsibility I felt to help others find their way.

Eventually, I left my career in healthcare administration to work full-time supporting families impacted by peroxisomal disorders. Today, I serve as Director of Family Programs for the Global Foundation for Peroxisomal Disorders (GFPD) and co-founder of Bubba’s Light, Inc. I am passionate about empowering families and helping them navigate life with unique and complex disabilities and healthcare needs.

My “why” is simple: I know what it feels like to be isolated. Family leadership, for me, is about making sure no one else has to walk that path alone.

Katie Sacra shares a joyful moment with her son, reflecting the love, resilience, and strength at the heart of family leadership.

Katie Sacra brings passion and strength to her role at GFPD, championing families affected by rare diseases and disabilities.

Building Pathways: Sustaining Family Leadership for the Future

Edgenie Bellah

My professional journey of partnering with families began when I was a young professional and new mother, navigating the unknown as we learned more about my firstborn son’s disabilities. Those experiences made my work deeply personal, fueling my commitment to connect with other families on similar paths. Early in my career as a Children’s Program Consultant with the Texas Commission for the Blind (now the HHS Blind Children’s Vocational Discovery and Development Program), I sought out the wisdom of seasoned family leaders and quietly observed them in action. When I joined the Texas Deafblind Project team, I brought with me both the lessons learned from those family leaders and the lived experience that continues to drive my passion for family engagement and leadership.

In 2003, just a year after joining the team, we responded to a call from the U.S. Office of Special Education Programs to make family leadership a priority in grant-funded deafblind projects. We saw an urgent need: many family organizations were losing leaders, and there didn’t seem to be new leaders who felt confident in stepping into vacated positions. That moment became a trailhead for something new—the Texas Family Leadership Series, launched in 2004.

For the next 14 years, this work evolved into two connected year-long training series. The Family Engagement Series helped families understand themselves, their child, and their community, and how to be effective partners in shaping local supports. The Family Leadership Series served as another step in the leadership journey for families ready to take on broader systems change—equipping them with the skills, networks, and confidence to lead—building trail markers so others can navigate their own routes. In both, the goal is the same: to create clear, walkable paths where families can grow into leadership at their own pace, with mentors walking alongside them.

As NFADB’s Affiliate Coordinator, I also have the privilege of partnering with the family organizations that make up the NFADB Affiliate Network. This passionate community of leaders spans the country, each organization deeply rooted in its local context yet connected through shared values and experiences. Together, we learn from one another about the changing needs of families, the diverse ways leadership can grow, and the supports that make the journey sustainable. These relationships continually remind me that the work of building and maintaining pathways is never done—it’s a collaborative effort, enriched by every traveler who shares their map.

The results have been powerful. Two new family organizations have formed and are still active today. Graduates now serve on boards and advisory committees, lead systems improvements, and return as trainers and collaborators. In doing so, they plant new trail markers for the next wave of leaders.

While the pandemic created an unexpected break, graduates of our Pathways to Leadership training have told us we need to return to providing them. This time, the training team will be co-created with family leaders, each of us walking side by side to shape the process—from refreshing the training materials to recruiting, facilitating, and leading the series. Together, we’ll leave new trail markers for the next wave of leaders. What better way for the community to implement Priority 8 together!

One of the most important lessons I’ve learned is that leadership comes in many forms. It’s not just the person at the podium or traveling to the state capital; it’s the parent who shows up to share their story, the caregiver who mentors another family, or the champion who speaks up in a local meeting. However they show up, they are all building and maintaining the pathways that make our community stronger.

Closing Reflections and Call to Action

These stories show that leadership is both deeply personal and profoundly collective. It might start with championing for a child, connecting with another parent, or accepting an invitation to join a group. Over time, these moments weave together into a map of progress—clearer, wider, and better marked for those who follow.

The impact of family leadership development is best expressed in the voices of those who have walked the path—voices that show how empowerment grows into community, and how community leads to lasting impact:

“Empowerment. That’s what the Family Leadership sessions gave me. Empowerment to take charge of my life, my wellbeing, my family, and my son’s needs. Empowerment to move through the darkness toward the light with a greater understanding of what the future can look like using the tools of collaboration, education, leadership for change, storytelling, communication, and leadership given to me by leaders whom I respected and admired.”
— Barbara Knighton, Texas Systems Family Leadership Graduate, Class of 2018

“Community. The Texas Deafblind Family Leadership training gave me a community of leaders and a network of support I hadn’t even realized I was missing. It equipped me with tools to step into leadership in many settings—including in my own community. For parents, the education and encouragement offered through this program are truly invaluable.”
— Jennifer Vincent, Texas Deafblind Family Leadership Graduate, Class of 2007

“Impact. Family Leadership training gave me the tools I needed to advocate not only at the federal and state levels with lawmakers but also within our school, church, restaurants, sports and entertainment venues, and even on the playground. Although I was the one who attended the training, my whole family reaped the benefits. Together, we became stronger advocates, able to facilitate constructive changes, model positive interactions, and help reshape attitudes. I truly believe our whole community benefited.

The Family Leadership training series gave me a new perspective. I learned not to accept ‘exceptions’ in our case simply, but to insist upon system changes that would aid those who came after us. I also learned to see beyond my child’s limitations. My daughter was so much more than her disabilities. Despite significant hearing, vision, mobility, and communication challenges, she became a gifted self-advocate. She ‘rolled’ the halls of the Capitol, successfully testifying with the help of her siblings and a communication device. Some of her most powerful advocacy came not from words, but from living fully in public—showing people what she could do, not what she could not.”
— Alaine Hinds, Texas Family Deafblind Leadership Graduate, Inaugural Class of 2005

The 13 inaugural members of the Texas Deafblind Family Leadership Series gathered to connect, learn, and lead—laying the foundation for future generations of empowered families.

Together, these reflections remind us that when families are supported to lead, they don’t just change their own journeys—they widen the path for all who follow. This is the heart of Priority 8: amplifying diverse family voices, inclusion, and leadership at every level.

The call to action is clear: family leadership pathways are not built by accident—they are created when each of us lays down markers for others to follow.

For families: Choose your path with courage and intention—each step you take builds resilience in your family and strengthens the wider community. Your voice and your story light the way for others.

For family organizations: Champion clear pathways for leadership, partnering with families and professionals to turn lived experience into collective action and lasting systemic change.

For professionals and state projects: Co-create inclusive family leadership pathways, elevating family expertise and ensuring every voice, especially those too often unheard, is included to shape decisions and spark lasting impact.

When we invest in family leadership, the voices, experiences, and wisdom of families are not just heard—they help clear the trail and guide the way forward. The journey of family leadership is not walked alone—it is built together. Add your voice, your story, your map. Together, we can co-create national family leadership pathways that future generations will walk with strength and confidence.