At Target ALS, we recognize that the future of ALS research and therapeutic development must be informed by those most directly affected. That’s why we are honored to collaborate with Genetic ALS & FTD: End the Legacy, a patient-led organization reshaping how the scientific community approaches inherited ALS and frontotemporal dementia (FTD).
Founded by individuals with personal connections to familial ALS and FTD, End the Legacy emerged in response to a critical gap: the absence of resources, recognition, and research priorities centered on those at genetic risk. Since its inception as a formal nonprofit in 2023, the organization has catalyzed an important cultural shift – one that positions the lived experiences of families at risk not as secondary, but as essential to the broader ALS and FTD landscape.
As Jean Swidler, co-founder of End the Legacy, explained: “We needed to end these diseases, but we also needed to show up for one another while we wait for treatments. That meant building community, sharing knowledge, and ensuring our voices were no longer left out of research conversations.”
Through their annual summit, designed by and for the impacted community, End the Legacy has created a model that moves beyond traditional scientific conferences. It’s a space where the genetic ALS and FTD community takes the lead, fostering dialogue with clinicians, ethicists, and researchers about what truly matters in trial design, diagnostics, and care. The importance of this cannot be understated. As Jean explained, “In our personal lives, no one understands this risk, and even in our families sharing the risk, many may not want to talk about it. Only by having spaces for us, by us, can we feel that community connection and integrate this risk into our conception of self.”
At Target ALS, our commitment to advancing treatments for ALS includes expanding our efforts to better understand pre-symptomatic stages of the disease, accelerate early diagnosis, and drive biomarker and gene therapy discovery. Programs such as our Global ALS Natural History Study, our community-based pop-up clinics, and the Target ALS Data Engine are aligned with this vision. They aim to collect high-quality, representative data that will ultimately enable earlier interventions and more precise therapies, including for those with known genetic risk factors. Jean commented, “Researchers may explore any way they want to define disease pathogenesis and find druggable pathways, but only patients can define what is clinically meaningful.”
This partnership underscores a shared understanding: scientific progress is most effective when paired with the insights and priorities of the communities it seeks to serve.
As Jean emphasized, “Those at risk are not an academic abstraction; we are a global population with urgent, real-world needs. When it comes to defining meaningful clinical outcomes, our involvement is not optional; it’s foundational.” She added, “We are not merely an interesting academic question; we are a population of people, and we are everywhere.”
We are proud to work alongside End the Legacy and grateful for their continued leadership, advocacy, and partnership.
To learn more or get involved, visit endthelegacy.org.
