Reconstruct the whole case
Preserve the exact molecular result, original sources, 15 clinical areas, chronology, surrounding conditions, interventions, recovery, and explicit gaps.
PURPOSE & TEAM
Built because no single record held the whole story.
ASH1L.org connects molecular findings, clinical records, family observations, and research questions across development and life over time.
WHY THIS BEGAN
Families could name ASH1L long before they could see the whole course.
Information was divided across genetic reports, specialties, records, years, and countries. The founders began connecting those pieces so that onset, change, intervention, persistence, and recovery could remain in chronology—without treating observation as proof.
Families connected histories
Molecular reports, clinical records, daily changes, and questions were brought back into one chronology.
Records became structured evidence
Records and observations were organized into timelines without turning possibilities into facts.
Repeated signals became testable questions
Repeated observations across different histories became research questions that future studies can test.
BUILT WITH THE ASH1L COMMUNITY
The knowledge here belongs to the community that made it possible.
No one family is the whole story.
We thank every person with ASH1L and every family who has participated—by asking a question, sharing an observation, locating a record, clarifying a detail, translating a term, connecting another family, or helping decide what should be studied next.
Every family strengthens the ASH1L community. Together, those contributions help preserve what is known, make what is still missing visible, and turn family questions into clearer priorities for care and research.
WHAT GUIDES THE WORK
Human enough to preserve the story. Rigorous enough to test it.
The structure is designed to keep lived history useful without asking it to prove more than the available evidence can support.
Compare responsibly
Use the right group of people for each comparison.
Translate carefully
Turn what families and records show into questions that research can test.
LEADERSHIP & SCIENTIFIC RELATIONSHIPS
Family-led, community-built, and strengthened by specific scientific dialogue.
ASH1L.org is led by its three family co-founders and built with the international ASH1L community.
ONGOING SCIENTIFIC DIALOGUE
Jin He, MD, PhD
Associate Professor · Biochemistry & Molecular Biology · Genetics & Genome Sciences Program · Michigan State University
Scientific dialogue between Abbey Soyars and Dr. He has helped connect family-derived questions with ASH1L chromatin biology, developmental timing, experimental models, cell identity, and measurable mechanisms.
FAMILY-CALL PRESENTERS
Kristen Brennand, PhD
Ellen J. Hoffman, MD, PhD
We thank Dr. Brennand and Dr. Hoffman for presenting during a family call and sharing scientific perspective that helped the community frame family-derived observations, evidence limits, and questions suitable for rigorous study.
Researchers and clinicians are named only in the capacity described. Inclusion does not imply a formal advisory role, institutional sponsorship, or endorsement of all site content.
SCOPE & INTEGRITY
Clear about what the project is—and what it cannot claim.
What this is
A family-founded project organizing de-identified molecular results, longitudinal histories, scientific evidence, and research questions.
What it does not claim
It is not a prevalence registry, medical advice, proof of a shared cause, an institutional research program, or a prediction of an individual's course.