For as long as ALS and FTD have been known, families with autosomal dominant inheritance have been observed. Despite progress in care and treatment, no guidance for at-risk relatives in inherited ALS and FTD families had been formalized. To address this, a workshop was held in Philadelphia in 2023 hosted by the ALS Hope Foundation and the affiliated genetic ALS and FTD organization End the Legacy. The output of that assembly of researchers, clinicians, industry and community representatives was the paper detailing clinical guidance for those at risk of genetic ALS and FTD published in late 2024.
The first public introduction to this work will be this webinar hosted by End the Legacy. Dr. Terry Heiman-Patterson of Temple University and Dr. Michael Benatar of the University of Miami, the project's lead researchers, will present a brief overview, and there will be time for a short Q&A. Please consider telling impacted family members about this, as broad knowledge of this new advice is important.
We thank all who participated in and sponsored the workshop and helped with the drafting of the report.
Link to the report: https://jnnp.bmj.com/content/early/2025/01/31/jnnp-2024-334339