Note: These quotes and reflections are from members of the cystinosis community who were in attendance at the 2023 Cystinosis Research Network Family Conference which took place in Nashville, TN from July 13-15, 2023. 

“There was a palpable sense of excitement, anticipation and connection as attendees arrived to check in.  It had been four years since the last in-person conference.  (Due to Covid concerns the 2021 conference was virtual.) Old friends reconnected with hugs, smiles, and conversations, happy for the opportunity to meet again in-person this year. Researchers, doctors, and industry partners also gathered to share, learn, and be a part of this special experience that can’t be described only felt.” – Terri Schleuder, caregiver

“The most recent Cystinosis Research Network conference in Nashville was inspiring. As an adult living with cystinosis, seeing the support and enthusiasm in our rare disease community is something I truly cherish. Observing my peers and the younger families thriving with cystinosis is a reality we all have worked diligently for, seeing it all come to fruition is a reminder of how there truly is strength in numbers. I could have never imagined in my lifetime we would be discussing the multiple options available to treat future generations. On a more personal note, being surrounded by other adults thriving with cystinosis is a reminder of how far we have come and how we can lead by example to uplift one another. Many of the adult patients are getting older and having a community to laugh and cry with gives us purpose and solidarity. I am honored to be a part of the cystinosis community and envision a bright future with many more conferences and events for community engagement to come.” – KD, adult living with cystinosis 

“Our experience as first-time CRN conference attendees was extraordinary in every way. The clinical information presented reiterated things I had learned previously while also introducing concepts I was eager to learn; I could not write notes or take pictures of slides fast enough in some of the sessions. The opportunity to hear from and ask direct questions to the cystinosis specialists was enthralling, knowing that several of them had been involved with cystinosis from its early recognition and played a critical role in the research and development of the treatment options available today. 

I was particularly struck by the comments shared and interactions I had with several of the adults living with cystinosis- meeting Jordan Janz as the stem cell trial trailblazer left us feeling starstruck, like we had met a celebrity in our rare disease world. There wasn’t enough time to express to Jordan and the other cystinosis adults (and their parents) what their experience has done/will continue to do for our kids, and the contributions their efforts have made to the evolution of managing this disease. 

Getting to spend time with other parents new to the journey like us, some even newer, gave us an indescribable, unprecedented sense of community- though many of us had never met, there is an instant connection and empathy on a level likely deeper than anything else in our lives. On a day-to-day basis, cystinosis can feel overwhelming and it is often difficult to find people in our everyday lives that can relate. However, the conference allowed us in-person time with other families that understand our struggles, establishing lasting relationships that we can lean on for support in the years to come. Not to mention the connections our children are making- Briley is still talking about the friends she met in Nashville; she does not yet understand the full spectrum of what these friendships will mean in the coming years. 

As a parent of a young child with a rare disease, feeling like I have connectivity and resources is critical for my child’s physical health, my mental health, and my family’s overall well-being. We left the CRN conference feeling empowered and refreshed with realistic, meaningful access to people and information immediately applicable in our lives. We eagerly look forward to the next CRN event!”– Heather Rothrock, caregiver