Camryn Berry’s Experience at the FD/MAS Community Conference
This giving season, we’re focusing on the story of Camryn Berry, a patient and a third year P.h.D. student researching pain mechanisms of fibrous dysplasia, McCune-Albright syndrome (FD/MAS). Camryn recently attended the FD/MAS Community Conference and shared a bit about her experience:
I attended the Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS) Community Conference in September of 2023 with the support of the Uplifting Athletes Researcher Travel Program. This community conference brought together patients, caregivers, clinicians, researchers, and students to focus the priorities of the community to provide those living with FD/MAS the best possible quality of life and care.
As a researcher and student, I was moved by the collaboration and communication that took place at this conference. Listening to patient testimonies reinvigorated my passion for
answering the critical questions that must be investigated to treat this rare disease. The monotony of benchtop research often causes a mental and emotional disconnect from the true purpose behind the project. The opportunity to hear the vulnerability of patients and their caregivers was inspirational and helped to refocus my efforts. It was an honor to be able to provide reassurance that there are researchers like me working to address their concerns. Many patients spoke to the pain that they experience every day of their lives. My research serves to answer the pain mechanisms responsible for causing this pain. When I shared my plan for my research, I was able to see the concern melt away from the faces of many patients and caregivers.
Though my research could provide better guidance for how to treat pain in FD patients, I could see how powerful it was to simply acknowledge that I believed what they were experiencing. It is vital that students and researchers interact with the patient community to gain further insights into the purpose of their research, and it is vital that patients and caregivers interact with the research community to ensure that they are heard and provided with hope for the future.
As an FD patient myself, I could not be more grateful for the opportunity to attend this community conference. It was so important to me and other patients that we were given this platform to collaborate with researchers and communicate what we felt were the questions we needed answered. It can feel hopeless at times as a patient to be at the mercy of scientists and clinicians, but being able to speak to these people, to look them in the eyes and tell my story, filled me with hope for the future of my rare disease community.
We are grateful to all those who came and made the FD/MAS Community Conference a success. We’re also grateful to Camryn for focusing her talents on FD/MAS research and sharing her experience with us.
