Coming to the 2025 International CHARGE Syndrome Conference, I was filled with excitement and passion that had built up over the past two years. I felt honored to be named a Sandra Davenport Fellow for a second time and was invigorated by the opportunities this fellowship would bring to me once again. Without this fellowship I would have not been able to attend the conference this year, which would have limited my growth as an inspiring young professional in the CHARGE syndrome community.
As a part of the Sandra Davenport Fellowship, we are able to attend the Meg Hefner Professional Day. This day is intended for professionals to connect and engage in conversations that would not be covered in the general conference. As an individual that is interested in the intersection of science and education, Tim Hartstorne’s talk on behavior phenotypes was inspiring to me. He shared how behavior forms through a triangle of pain, sensory issues, and anxiety. This was something I had not heard of before and it made me reflect on behaviors I have seen my students exhibit in the past and how I could have interpreted their behaviors differently. Additionally, hearing Donna Martin present on her current research, made me excited for the research that is to come and that I will hopefully be a part of in the future. Meg Hefner and I sat together at lunch, where I was able to listen to her experience in the genetics field. She shared how she was able to diagnose a child with CHARGE syndrome through a polaroid, which showed how far we have come in the scientific community. The ability to be a part of the Meg Hefner Professional Day allowed me to expand my knowledge on the current research being conducted in the CHARGE syndrome community.
Not only did the sessions in the Meg Hefner Professional Day expand my knowledge on CHARGE syndrome, but there were many sessions that were enlightening for me. The most impactful sessions for me included Taking Charge of My CHARGE presented by Ryder Schlafman Hieb, Behavior, Communication and Connection presented by Nehuen Rodriguez Picatto, and my own presentation Decoding CHARGE Syndrome. Taking Charge of My CHARGE presented by Ryder Schlafman Hieb was a presentation where a high schooler and her team shared their experiences of working with Ryder. Hearing Ryder’s story was inspiring as it showed the amount of collaboration needed to support an individual with CHARGE syndrome. Seeing Ryder’s independence and confidence was invigorating as a professional, as it showed the payoff that can come from this effective collaboration. Behavior, Communication and Connection presented by Nehuen Rodriguez Picatto, reminded me of a feeling that I have been missing in my current life. During his presentation, he shared a story of one of his students and how he was able to address her behaviors. Seeing the improvements and reliance he had for his students, reminded me of the connections I used to have in the classroom. He reminded me that these students are in need of empathetic teachers that will not ignore their behaviors but instead embrace them. Lastly, presenting my own presentation was life changing. Decoding CHARGE Syndrome was a passion project that started after the 2023 CHARGE Syndrome Conference. As I worked on this project for two years, I did not realize the impact it truly had on the community. When the video was played, I looked around the auditorium. There were parents recording the video and when it was over the audience broke out in applause. Seeing the impact the video had first had was inspiring to what is to come for me in the future. These presentations provide me with skills and inspiration that will follow me for the rest of my career.
Beyond preparing me with essential skills for my career, the Sandra Davenport fellowship gave me lasting connections with both the CHARGE syndrome community and a network of young professionals. This was my second conference, so I was able to reconnect with the people I had met in the last conference. It felt like coming home to an old friend after not seeing each other for a long time. I was able to connect with my old family match, as well as meet some of the mothers that I interviewed for my master’s thesis. Seeing these people again was so heart warming. Additionally, I am grateful for the Johnson family for agreeing to do the family match program. They truly enlightened me about how different states view special education resources. It was apart that there was an ongoing battle of getting support for their son Holden and that this conference was a break from the struggles in their daily lives. Furthermore, the connections I made within this fellowship have changed my life for the better. The class of 2025 Sandra Davenport fellow was filled with inspiring young professionals that I am excited to work alongside in the future. Each Sandra Davenport fellow brought their unique which cultivated a group that will be able to provide support for each other for years to come. I look forward to seeing my connections grow within the CHARGE syndrome community and the Sandra Davenport fellow community.
The hardest part of the conference is leaving the conference. For when you are at the International CHARGE Syndrome Conference, you do not feel isolated. You are around a network of support and people who understand the burning passion within you. As I return to the normalities of life, I will not forget the passion that was re-ignited within me. I constantly think of Nehuen’s presentation and how I felt that desire to connect with a student in the way he did. I am reminded of the kindness that was shared with me through my family match. I am invigorated by what I have learned and cannot wait to return to the 2027 International CHARGE Syndrome Conference with new research.
