DAY 1 Question and Answer Panel | 2023 FAST Summit on Angelman Syndrome

Quick Overview

The panelists at the 2023 FAST Summit on Angelman Syndrome answered questions from the community, discussing the status of Angelman Syndrome research and the gaps that need further exploration. They emphasized the importance of continued support, participation in research, and sharing stories to raise awareness and push for advancements in treatments. The panelists also highlighted the need for balance, self-care, and giving oneself grace in the journey of caring for individuals with Angelman Syndrome. They encouraged families to continue therapies and educational interventions, push their children to reach their full potential, and participate in natural history studies and surveys. The panelists acknowledged the challenges ahead but expressed hope for the future and the promise of personalized medicine.

Introduction

The first day of the 2023 FAST Science Summit on Angelman Syndrome concluded with a question and answer panel. The panel consisted of various speakers who had presented throughout the day. The panelists addressed pre-asked questions from the community as well as live questions from the audience. The panelists provided valuable insights and advice for the Angelman Syndrome community.

Key Takeaways

• Angelman Syndrome research is at the forefront of neurodevelopmental research, thanks to the energy and dedication of the community.
• More research is needed to explore the other genes associated with Angelman Syndrome, especially for the deletion genotype.
• Translational research avenues are constantly being explored, and there is still much to learn and discover.
• The use of base editing may be a promising approach for personalized medicine in the future.
• Collaboration and participation in research studies are crucial for advancing knowledge and finding effective treatments.
• Caregiver feedback is highly valued and can help improve research and outcomes measures.
• It is important to maintain a balance and take care of oneself while advocating for the needs of individuals with Angelman Syndrome.
• The community should continue to support research efforts and participate in clinical trials.
• The path to finding effective treatments may be challenging, but the community’s dedication and perseverance will lead to progress.

Conclusion

The question and answer panel provided an opportunity for the Angelman Syndrome community to engage with experts in the field and gain valuable insights. The panelists emphasized the importance of collaboration, participation in research, and caregiver feedback. They also acknowledged the challenges ahead but expressed optimism for the future. The community was encouraged to continue their support and advocacy efforts as they work towards improving the lives of individuals with Angelman Syndrome.