5 reasons to be excited about the ASXL Research Symposium and Family Conference
In just three weeks, over 100 family members, doctors, researchers, and outside experts will join together at the 2022 ASXL Research Symposium and Conference in Los Angeles. This meeting isn't just a chance to get together: it's a slingshot forward for the ASXL syndrome community as we seek to learn more about the ASXL genes and how to provide the best care for our children.
Here are 6 reasons this meeting is a catalyst for learning and collaboration that will benefit the entire ASXL syndrome community:
1) Research Roadmap strategic planning meeting
Using the results from the Research Roadmap Family Survey as the center of the discussion, representatives from all stakeholder groups (families, medical professionals, and scientists) will spend an entire day developing a strategic plan to identify and prioritize the research resources we need to lead us toward life-improving treatments as quickly and efficiently as possible.
2) Young investigators presenting their work
Building the network of researchers who have a scientific interest in ASXL genes and syndromes is critical to improving care and finding treatments. Six researchers who are in the early stages of their scientific careers will be presenting their work at the trainee poster session at the ASXL Research Symposium.
3) Eight research studies are recruiting participants
The Research Room is a critical opportunity for families living with ASXL syndromes to contribute data and biological samples to the research teams who are studying aspects of ASXL syndromes and other rare neurodevelopmental disorders. Eight research studies will be enrolling participants and sharing study information in the Research Room at the ASXL Family Conference.
4) Fundraising for research
Once we have our research strategic plan, we need the financial resources to fund it. A new component of the conference is the ARRE Foundation Celebration dinner on Friday evening, a fundraising event to support our mission including a silent auction (see below!).
5) Launch point for quarterly research roundtable meetings
At the ASXL Research Symposium, we will launch a series of recurring virtual meetings for the research community to meeting quarterly to encourage collaborations and scientific troubleshooting.
Want to join us in Los Angeles? It's not too late! Register here
