The 36th Annual Fanconi Anemia (FA) Scientific Symposium and Adult Retreat took place in Charlotte, North Carolina in September 2024, and brought together researchers, clinicians, advocates, individuals with FA and community members from across the globe. This year’s theme, “It Takes All of Us,” resonated with attendees, fostering collaboration and sparking new directions for FA research and support.
Scientific Symposium Highlights
Researchers presented on a wide array of topics, from the latest iteration of FA 101 to complex discussions about DNA repair, cancer, FA Neurological Syndrome, psychosocial research, bone marrow failure, and cutting-edge gene therapy.
In addition to the plenary sessions, the celebrated mentorship lunch provided a platform for 16 established researchers, 82 early-stage investigators, and 27 adult FA advocates to discuss careers, life paths, and FA research. This was a clear highlight, with many praising the collaborative atmosphere.
Early-stage investigators presented research during the poster sessions, offering opportunities for individuals with FA and their families to engage directly with scientists. This fostered new collaborations and strengthened the FA research community.
Adult Retreat Highlights
The Adult Retreat hosted 82 participants, including 40 adults with FA. Popular sessions included Dr. Lindsey Romick’s presentation on nutrition and Dr. Margaret MacMillan’s session on comprehensive care for adults with FA. Additional topics covered included cancer screening, self-advocacy, and mental health, providing valuable knowledge and support to the FA community.
The Living Memory Space, a cherished element from past retreats, returned with new crafts and contributions from the FA community. This reflective space allowed participants to honor loved ones and contribute creative expressions, fostering emotional connections.
The retreat featured several group support sessions tailored to different segments of the community: adults with FA, caregivers, parents, and care partners. Special thanks to Nancy Cincotta and Lori Krause for moderating these important sessions. Attendees appreciated the focus on mental health, with a participant noting that it was the first time they felt truly seen and understood regarding the complexities of living with FA.
A first-time attendee at the Adult Retreat summed up the impact of these gatherings:
“I cannot truly express what the last three days have meant to me. Three days of learning about Fanconi anemia and meeting people who also have FA was so worth it. There were times I felt so seen by learning about the nuances of having FA. The sense of family here is real, and I am so grateful, fortunate, and hopeful for having found it.”
The psychosocial luncheon highlighted the growing focus on mental health in FA research. Advocates and researchers discussed patient participation in research design, access to psychosocial support, and how to create standardized measures for future studies. Many participants expressed enthusiasm for continuing these discussions in future events.
For more on highlights of the events, take a look at FA adult Lexi Marshall’s recap article >>
International Collaboration and Future Directions
Before the plenary sessions, the International FA Summit convened 36 representatives from 16 countries, with Christine Krieg and Eunike Velleuer-Carlberg facilitating discussions about the successes of FA support organizations and plans for future collaboration.
On Sunday morning, the recognition of the FRIENDS Consortium for Data Sharing through a Memorandum of Understanding was a major milestone, marking a pivotal step in the push for open data sharing and FA cancer research collaboration.
Finally, researchers met Sunday morning to discuss the cancer prevention trial and momentum around trial design, potential compounds, and international collaboration. Experts brainstormed various approaches, fueling optimism about the future of FA cancer prevention efforts.
Awards and Recognition
An exciting part of the Symposium weekend is always the award banquet. This year, the Winn-Byrd Award was presented to Katherine de Los Santos and second place was awarded to Robin Lewis. Lisa Moreau and Drs. Neelam Giri and Eunike Velleuer-Carlberg were honored for their extensive contributions to the FA field. Additionally, the inaugural Lynn Frohnmayer Award for Outstanding Fundraising Achievement was awarded to Jeanne Atkinson and Steve Rice from the former Kendall and Taylor Atkinson Foundation for their remarkable contributions to FA research via fundraising.
Looking Forward
Next year’s Symposium and Adult Retreat will be held in Minneapolis from September 25–28, 2025. As the FA community continues to grow and innovate, these events serve as a critical platform for progress, collaboration, and connection. FCF and the FA community left Charlotte with renewed energy and optimism for the future, united in the shared mission to combat FA and improve the lives of those affected.
We look forward to seeing everyone again in Minneapolis for another impactful gathering.
