Genetic ALS & FTD Webinars
Ensuring our community and all those interested in Genetic ALS & FTD are able to hear directly from people working on topics of interest to and about us is a top priority for us. Below, see a list of our webinars, freely accessible on YouTube.
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
Alternative and off-label treatments that might reduce the risk of getting ALS
In 2025 we hosted Dr Richard Bedlack who shared learnings from his ALS Untangled project that may reduce the risk of developing genetic ALS .
Surprising Learnings from ALS Untangled
C9orf72 Penetrance Calculation Webinar
In 2024, we hosted Oxford Geneticist Dr Andrew Douglas as he spoke detailing a method to provide penetrance calculations for C9orf72 families.
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
Excercise in ALS
In 2023 we hosted PhD Daniel Brickman discussing what a literature review shows regarding ALS and Excercise
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
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
