First and foremost, I would like to thank the CHARGE Syndrome Foundation for selecting me to serve as a Sandra Davenport Fellow for the 2025 Conference. It was an absolute privilege to be included in the fellowship program as both a family member of an individual with CHARGE and as a future physician, aspiring to care for children with CHARGE syndrome. I was so inspired by the Foundation’s work in family advocacy, educational initiatives, and medical/scientific research. I am already looking forward to the 2027 conference in Dallas, TX and hope to remain involved with the Foundation in the interim!
Family Match
Among the many highlights of my experience as a 2025 Sandra Davenport Fellow was the family match program. I was fortunate enough to be paired with another fellow, Dane, and the Yeager family: Lindsey, Phil, Sienna (4 years old, pictured), and Ashton (2 years old). The Yeager family generously welcomed Dane and I into their family and granted us the opportunity to learn alongside them throughout the conference.
Lindsey and Phil are fierce advocates for their children and although Sienna is just four years old, the Yeager family is already deeply embedded in the CHARGE community. I was particularly impressed by their commitment to learning American Sign Language, to expand Sienna’s access to communication.
Sienna is an energetic four-year-old who loves to explore the world around her. Sienna is very expressive and full of laughter. Her favorite toy is a green robot (also pictured) and while at camp together, Sienna and I went to the sensory room, where she enjoyed playing on the trampoline and with the light-up toys. More than anything else, Sienna is incredibly social and loves spending time with others, whether it be running, dancing, or spinning. She has so much joy to share with those around her!
Camp
Another highlight of my experience at this year’s CHARGE Conference was returning to camp. I have been volunteering at camp since 2019, and it is one of the (admittedly many) best parts of attending the conference. My favorite part of camp is the sensory room, which is a low-light, quiet space where individuals of all ages can hangout and decompress. While in the sensory room at this year’s conference, I met Leo (on the left) and Tillman (on the right), who are one-year-olds with CHARGE syndrome.
It was exciting to meet Leo and Tillman, as well as to learn that this year’s youngest attendee with CHARGE syndrome was just three months old. In my experience, infants and toddlers with CHARGE are often unable to attend Conference due to their medical complexity and/or fragility. As a future physician, watching Leo and Tillman play together reminded me of the impact of medical progress and advancements on the lives of individuals with CHARGE syndrome.
Building a Professional Network
Since attending my first CHARGE Conference in 2013, I have known that the CHARGE community is truly a family. However, in attending this year’s conference as Sandra Davenport Fellow, I realized a new dimension of the CHARGE family, composed professionals – educators, healthcare professionals, researchers, and scientists – dedicated to improving the lives of individuals with CHARGE syndrome. I originally applied for the Davenport Fellowship so that I could build a professional network of individuals interested in CHARGE syndrome. Instead of a network, however, I built a family. It was a true privilege to have the opportunity to get to know this year’s cohort of Davenport Fellows as well as our mentors, Lily, Megan, Sara, Rilla, and Abbey. I know I will lean on these professionals moving forward to improve patient care for individuals with CHARGE syndrome.
I feel so lucky to call these brilliant and talented professionals my friends!
Reconnecting with my CHARGE Family
Last but certainly not least, it brought me great joy to reconnect with my CHARGE family, both old and new friends.
I first met Blakely (on the left) at camp during the 2023 conference. At the time, Blakely was content curled up with a blanket in her wagon with her iPad. Now, just two years later, Blakely is almost unrecognizable. Her language skills have exploded, and she is one of the fastest signers I know! We had the best time dancing the night away at the glow party.
It feels appropriate to conclude my reflection with a collage made by MichelleD’Agostino (on the right). I first met Landon D’Agostino and his family back in 2015 at my second CHARGE conference. Landon was just four years old, and his two younger brothers, Colby and Blake, were two. We instantly bonded and when I learned that the D’Agostino’s lived just outside of Boston, we stayed in touch, coordinating visits between conferences. Over the past ten years, I have had the pleasure of watching Landon grow into an aspiring scientist and video game aficionado. I can’t wait to see all he will achieve!
