Genetic ALS & FTD Webinars
Explore a selection of our free recorded webinars featuring researchers, clinicians, and community members discussing topics relevant to genetic ALS & FTD.
These presentations are provided for general education. They reflect the speakers' views of the evidence available at the time of recording and should not be interpreted as medical advice.
Neurogenetics Update from the NIH
Drs Traynor and Kwan of the National Institutes of Health provide updates on their work in the context of genetic ALS and FTD
Drs Traynor and Kwan Webinar
Metabolic Research Across Stages of Genetic ALS
Dr. Ikjae Lee discusses research on metabolism and ALS among people at different stages of genetic risk and disease.
Dr. Lee Webinar
French Language Webinar on Genetic ALS and FTD from Dr Amador
Dr Maria del Mar Amador gave this informative overview of Genetic ALS and FTD for a french audience. Translate subtitles for English, German, Spanish and Italian available.
Dr Amador Webinar
ALS Untangled: Evaluating Proposed Risk-Reduction Approaches
In 2025, Dr. Richard Bedlack discussed how ALS Untangled evaluates evidence concerning alternative and off-label interventions.
Surprising Learnings from ALS Untangled
Understanding C9orf72 Penetrance Estimates
In 2024, Dr. Andrew Douglas discussed a research method for estimating C9orf72-associated disease risk and the factors that can affect penetrance estimates.
C9orf72 Penetrance Calculation Webinar
Genetic Research Education Series
In 2024 we arranged 4 webinars focused on research opportunities for people impacted by 4 ALS and FTD genes.
GRN Research Webinar
Genetic Research Education Series
In 2024 we arranged 4 webinars focused on research opportunities for people impacted by 4 ALS and FTD genes.
TARDBP Research Webinar
C9orf72 Loss of Function Theory
In 2024 we hosted noted researcher Prof Janice Roberstson.
C9orf72 LOF Webinar
Exercise and Genetic ALS Risk
In 2023, Daniel Brickman, PhD, reviewed published evidence concerning exercise and ALS risk, including evidence relevant to people at genetic risk.
Excercise in ALS Webinar
C9orf72 Penetrance Update
In 2023 we hosted the first public discussion of a new analysis of the penetrance of c9orf72.
C9orf72 Penetrance Webinar
Cardiovascular Health in Genetic FTD
In 2023 we hosted a researcher how shared what cardiovascular health may relate to risk of genetic FTD
Cardiovascular Health in Genetic FTD
C9orf72 Therapeutic Approaches
In 2023, we hosted Dr Rothstein on the topic of C9orf72 therapeutic development.
Dr Rothstein Webinar
Cryptic Exon Biomarker Talk
In 2023 a researcher shared about a new TDP-43 biomarker candidate.
TDP-43 Cryptic Exon Biomarker
Les avancées de la recherche pour les personnes à risque génétique élevé
Le 7 septembre 2026, End The Legacy a organisé un webinaire consacré à plusieurs études de recherche en cours en France et en Europe pour les personnes à risque génétique élevé de développer une SLA et/ou une DFT.
Le Dr Maria del Mar Amador, le Dr Laura Tzeplaeff et Marine Borg ont présenté les études NEUROPREMS, FIBRALS et preMORIAL/premodiALS, ainsi qu’une étude consacrée au vécu psychologique des personnes à risque génétique de SLA/DFT.
NeuroPrem and PremodiALS Updates
Updates on Biological Markers For ALS from Gregory Lab
Prof. Jenna Gregory gave an informative overview of recent work from her lab on developing biological markers from pathological samples, an update from a 2023 presentation. Translated subtitles for French, German, Spanish and Italian available.
Gregory Lab Webinar
Update on Genetic MND Research at Oxford University
Dr Alexander Thompson provides an overview of the robust genetic MND research portfolio of Oxford University including the Acorn Longitudinal study, and Dr Gao provides a detailed look at her study of C9orf72 Carriers in the UK Biobank.
Update on Genetic MND Research At Oxford
An Introduction to At Risk Care Guidance
In 2025 we hosted Drs Michael Benatar and Terry Heiman-Patterson to present on the recently published care guidance for those at risk of genetic ALS and FTD.
At Risk Care Guidance
Genetic Research Education Series
In 2024 we arranged 4 webinars focused on research opportunities for people impacted by 4 ALS and FTD genes.
C9orf72 Research Webinar
Genetic Research Education Series
In 2024 we arranged 4 webinars focused on research opportunities for people impacted by 4 ALS and FTD genes.
SOD1 Research Webinar
Genetic Testing in ALS 2024 Webinar
In 2024 we hosted a webinar on practical updates in ALS Genetic Testing.
Genetic Testing Webinar
NASEM Report Out
In 2024 we hosted a discussion on the recently released NASEM report on ALS.
NASEM ALS Report Webinar
Genetic Modifiers In FTD
In 2023 we hosted researchers from the Raddamaker lab.
GRN Modifier Webinar
C9orf72 In Population Screens
In 2023 we hosted a geneticist who studied how often C9 appeared in the general public.
Expansions in General Public Webinar
The Gut in ALS Development
In 2023 we hosted Dr Jenna Gregory sharing on her research in ALS pathology.
The Role of the Gut Webinar
Brain Function In Familial ALS
In 2023 we hosted a talk from Dr Kiernan.
Brain Function Webinar
