The 2025 International CHARGE Syndrome Conference strengthened my identity as both a nurse and an individual with CHARGE syndrome. Through the Sandra Davenport Fellowship, my family match, volunteer roles, and breakout sessions, I saw how far our community has come. As an attendee since 2015, this was the first conference where I truly felt that adults with CHARGE were seen as mature individuals who have something significant to contribute—not only to society, but to the Foundation itself. For the first time, we were actively invited into the conversations about our care and our future.
Fellowship
Being a Davenport Fellow gave me the structured space to process my lived experience and to learn how to support others through a professional lens. Walking into the conference felt like entering a room where everyone already speaks the language of my life. The combination of science, story, and community made this an ideal launchpad for what I want to build next—both personally (skills, networks) and systemically (adult care pathways, research, and communication access). It was truly the perfect first chapter in my deeper journey into “CHARGE World.”
During my time at the conference, I learned many key points that will help improve the lives of individuals with CHARGE. Research is crucial: from genotype/phenotype studies to behavioral and mental health outcomes, I saw how data drives funding, clinical protocols, and family guidance. Even “basic” education about CHARGE remains essential—because parents, teachers, and clinicians who are new to CHARGE need an accurate foundation to build upon. I also learned that communication barriers are more detrimental than many assume. Across sessions and stories, communication challenges consistently surfaced as the root issue complicating nearly everything else: behavior, education, health care access, and independence. Building practical, individualized communication systems (including ASL, AAC, and trained partners) is essential.
Participating in this fellowship alongside such accomplished peers was a highlight. Learning shoulder-to-shoulder with them, while also engaging with established professionals in the CHARGE community, gave me confidence in my ability to pursue anything I set my mind to. Each of us had something phenomenal to add to “CHARGE World”. I feel honored to have worked, conversed, and laughed with such a bright and wonderful group of individuals. I also deeply admire the dedication and expertise of the mentors who guided us throughout the fellowship. Their insight and encouragement set a powerful example of leadership that I aspire to follow in my own advocacy and professional journey.
Family Match
One of the most meaningful parts of the conference for me was being matched with Cami and her mom, Lili. Cami is a joyful three-year-old whose favorite color is green. She enjoys some food but is currently 100% tube-dependent. She has two cochlear implants, communicates in sign language, and is thriving beautifully. Cami also shows many classic CHARGE characteristics, and I noticed she does some of the same exact things I used to do as a child—running in circles, crawling, and throwing herself around. She attends a deaf school and loves it, which gives her a strong foundation for communication.
Lili and her husband, Zach, are a lovely, dedicated young couple. Their love and commitment to Cami’s well-being shone through every interaction. They were attentive, proactive, and eager to learn and connect. Being able to share my story and experiences with them, while also simply being present with their family, was an honor. It gave me the chance to be a role model and show what’s possible, while also learning from the strength and dedication of parents at the beginning of this journey.
I also had the opportunity to partner with Stacey, my co-fellow, for this family match. Working with Stacey was wonderful—her warmth, insight, and energy made our partnership strong, and together we were able to support Lili and Cami in meaningful ways. This experience reminded me of the power of collaboration and how much stronger we are when we work together.
Volunteering
While volunteering at camp, I was able to connect not only with Cami but with other children with CHARGE as well. From my own experience living with CHARGE syndrome, and working every day with medically complex children, I was able to see them beyond their diagnosis. It squeezed my heart to see all the children interact with one another without judgment or worry about whether they would be included.
Camp also reminded me that Cami is, above all else, a typical three-year-old—curious, playful, and full of joy. She absolutely loved parachute time and was devastated when it was put away.
I also learned the ASL sign for “Mama” as Cami fiercely signed it when she was done playing. Volunteering at camp allowed me to connect with her not just as a child with CHARGE, but simply as a little girl living her best three-year-old life. I also volunteered as a moderator for Dr. Blake’s presentation on “Medical Issues in Adults with CHARGE.” I enjoyed taking charge (no pun intended) and supporting with directions, transitions, and informal peer support. Volunteering in this role let me contribute to the invisible scaffolding that makes the conference work, and it gave me confidence that I can take on large commitments and execute them successfully.
Professional Day
I thoroughly enjoyed Professional Day. The poster presentations were well constructed and the information was both intriguing and easy to understand. I had the opportunity to sit alongside highly accomplished professionals—people with advanced degrees, research expertise, and years of experience in the CHARGE field. Initially, I felt humbled to be among such an elite group, but what struck me most was how eager they were to talk with me. They treated me as a peer, recognizing that my lived experiences carry equal value alongside their academic knowledge. That moment showed me that my contribution was just as significant as anyone else’s.
During one of the sessions, I opened the floor with a question that has been on my heart: “What about adults with CHARGE?” Asking that question in a room full of professionals who have the influence and expertise to make real changes felt both empowering and necessary. The response was overwhelmingly positive—several professionals came up to me afterward to share how proud they were that I raised the issue. That moment affirmed for me that adult voices are not only welcome in these spaces—they are essential. It proved that one question can spark meaningful conversations and that I have a role in shaping the future of CHARGE care and research.
Glow Party
The Glow Party was pure joy! It was so refreshing to set aside the serious conversations and just dance, laugh, and celebrate with other self-advocates, families, and professionals. We had so much fun it was hard to call it a night! I got the chance to meet even more families I had only known online, which made it feel like a true reunion. The music, lights, and energy brought everyone together in such a unique way. I loved seeing the same people I had seen that morning in professional clothing now in funky outfits, letting loose and having fun. It was the perfect reminder that while CHARGE comes with challenges, our community also knows how to celebrate life.
Closing
I left the 2025 CHARGE Conference with clarity, inspiration, and momentum. This fellowship reminded me that my voice matters, my story has power, and adults with CHARGE have an essential place in shaping our community’s future. I am deeply grateful to the Foundation, to my mentors for their wisdom and
