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.

Updates on Biological Markers For ALS from Gregory Lab

Prof. Jenna Gregory gave am 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

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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

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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

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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

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Genetic Testing in ALS 2024 Webinar

In 2024 we hosted a webinar on practical updates in ALS Genetic Testing.

Genetic Testing Webinar

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NASEM Report Out

In 2024 we hosted a discussion on the recently released NASEM report on ALS.

NASEM ALS Report Webinar

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Genetic Modifiers In FTD

In 2023 we hosted researchers from the Raddamaker lab.

GRN Modifier Webinar

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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

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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

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Brain Function In Familial ALS

In 2023 we hosted a talk from Dr Kiernan.

Brain Function Webinar

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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

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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

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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

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C9orf72 Loss of Function Theory

In 2024 we hosted noted researcher Prof Janice Roberstson.

C9orf72 LOF Webinar

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Excercise in ALS

In 2023 we hosted PhD Daniel Brickman discussing what a literature review shows regarding ALS and Excercise

Excercise in ALS Webinar

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C9orf72 Penetrance Update

In 2023 we hosted the first public discussion of a new analysis of the penetrance of c9orf72.

C9orf72 Penetrance Webinar

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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

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C9orf72 Therapeutic Approaches

In 2023, we hosted Dr Rothstein on the topic of C9orf72 therapeutic development.

Dr Rothstein Webinar

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Cryptic Exon Biomarker Talk

In 2023 a researcher shared about a new TDP-43 biomarker candidate.

TDP-43 Cryptic Exon Biomarker

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