Turning Participation into Discovery
Thank you for being part of what comes next
Across the ASXL community, families are already making an extraordinary contribution to research, and we want to tell you how much that means to us.
Families are participating in the ASXL-Related Disorders Natural History Study and Biobank, contributing to the ASXL Census, and taking part in studies like the ASXL Behavioral Phenotyping Study (ALPS). These efforts require time, energy, and trust, and they are not taken for granted.
This collective participation is what makes progress possible. It is the starting point for discovery.
What participation makes possible
When families take part in research, they help build something that has not previously existed for ASXL-related disorders: a meaningful and connected body of clinical and biological data that researchers can use to better understand these conditions.
This growing body of data allows scientists to begin answering critical questions about how ASXL-related disorders present across the lifespan, how symptoms evolve over time, and which aspects of these conditions have the greatest impact on daily life. At the same time, biological samples contributed through the biobank are enabling researchers to develop cellular models that reflect real-world ASXL variants, providing an essential tool for studying how these genes function and can be targeted with drugs in future treatments.
Taken together, this work is beginning to form a clearer, more complete picture of ASXL-related disorders. It is not a single breakthrough, but a steady process of learning, built step by step through the contributions of families.
As this picture becomes clearer, the next phase of work becomes equally important: ensuring insights can be translated into meaningful scientific progress.
Participation creates the foundation for discovery, but discovery itself requires sustained investment. The data that families contribute must be carefully curated, analyzed, and interpreted. Biological samples must be processed and used to develop models that researchers can study over time.
This is not work that happens once. It is ongoing, cumulative, and dependent on consistency. In the same way that participation continues over time, the research it enables must also be supported over time.
This is where recurring support becomes so important. Turning participation into discovery takes money, and we need your help to fund this work.
Introducing the Discovery Society
To support this next phase of work, we are inviting members of our community to become part of the Discovery Society.
The Discovery Society is a group of monthly supporters who are helping to sustain the research that turns participation into discovery. These contributions provide the steady, reliable funding needed to support ongoing scientific work, ensuring that the data and samples already shared by families can continue to drive new insights and, ultimately, future treatments.
For many families, participation in research is one way of contributing to progress. Becoming a member of the Discovery Society is another. Together, these efforts create a more complete and sustainable pathway forward.
Become a monthly supporter of ASXL discovery
There is still much to learn about ASXL-related disorders, but meaningful progress is already underway because of this community.
By becoming a monthly supporter, you can help ensure that our work continues — that the participation we are seeing across the community leads to ongoing discovery, and that discovery continues to move us closer to future treatments.
Whether it is $10 a month or more, your support plays a direct role in sustaining the research that will shape what comes next.
Become a member of the Discovery Society and help power the next phase of ASXL research.