Fostering Partnerships and Future Research in Florence
An important part of developing new and innovative FD/MAS research is networking with researchers that have similar interests. This is one of the reasons FDF and FD/MAS researchers attended the 4th Meeting of the International FD/MAS Consortium. This meeting takes place annually with the goal of building connections among FD/MAS researchers. This year’s meeting took place in Florence, Italy and FDF was represented by research programs manager, Teneasha Washington.
Most excitingly, at this year’s consortium meeting FDF awarded the Inaugural Charles Harles Award for Excellence in FD/MAS Research. The award is named for the Founder of the Fibrous Dysplasia Foundation and is meant to help encourage young investigators to pursue the field of FD/MAS research. In addition to being recognized for their work, the winner is also awarded travel funds to support their attendance of this important meeting.
FDF is pleased to share that Kristen Pan, Pre-doctoral Fellow at the National Institutes of Health was awarded the Charles Harles Award for her abstract, “New Perspectives in Diagnosis and Management of Optic Neuropathy in Fibrous Dysplasia: Utility of Combined Optical Coherence Tomography and Computed Tomography.” Her research focuses on efforts to identify FD patients who have or are at increased risk of having long-term vision concerns. In addition, she focuses on the effectiveness of detecting vision concerns through the use of novel methods such as Optical coherence tomography (OCT) compared to traditional methods.
Kristen was also given the opportunity to share her research at the meeting. “I was excited to be able to present my research to the world’s experts on FDMAS. I think the work is exciting and addresses a major concern for patients with craniofacial FD. I hope sharing our findings, especially to this influential audience, will help disseminate the information, and possibly change the way we diagnose and monitor optic neuropathy in FD.” Dr. Pan shared that, without the Charles Harles award and the funds it provided for travel, she would not have been able to attend the Consortium meeting.
The meeting was also an opportunity to continue to work alongside the international patient groups and ensure that researchers hear the patient perspective and priorities. FDF connected with other FD/MAS patient groups including France, Spain, Scotland, and Brazil. “The patient groups were able to meet to discuss important priorities for the year and additional ways to build opportunities for partnerships with our networks” explained Teneasha. The FDF plans to continue to network with other FD/MAS patient groups in order to move the needle on priorities specific to patients. In addition, we look forward to finding ways for our community to build relationships with patients from other international patient groups.