top of page

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.

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

Screenshot 2025-06-03 at 7.52.20 AM.png

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

Screen Shot 2024-10-21 at 12.05.53 PM.png

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

Screen Shot 2024-09-18 at 3.59.53 AM.png

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

Screen Shot 2024-09-20 at 11.16.47 AM.png

C9orf72 Loss of Function Theory

In 2024 we hosted noted researcher Prof Janice Roberstson.

C9orf72 LOF Webinar

Screen Shot 2024-09-20 at 11.21.16 AM.png

Excercise in ALS 

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

Excercise in ALS Webinar

Screen Shot 2024-09-20 at 11.58.22 AM.png

C9orf72 Penetrance Update 

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

C9orf72 Penetrance Webinar

Screen Shot 2024-09-20 at 11.26.38 AM.png

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

Screen Shot 2024-09-20 at 11.40.45 AM.png

C9orf72  Therapeutic Approaches

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

Dr Rothstein Webinar

Screen Shot 2024-09-20 at 11.49.01 AM.png

Cryptic Exon Biomarker Talk

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

TDP-43 Cryptic Exon Biomarker

Screen Shot 2024-09-20 at 12.11.16 PM.png

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 

Screenshot 2025-06-03 at 7.48.37 AM.png

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

Screen Shot 2024-09-20 at 10.21.54 AM.png

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

Screen Shot 2024-09-20 at 10.33.57 AM.png

Genetic Testing in ALS 2024 Webinar

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

Genetic Testing Webinar

Screen Shot 2024-09-20 at 11.19.34 AM.png

NASEM Report Out

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

NASEM ALS Report Webinar

Screen Shot 2024-09-20 at 12.10.01 PM.png

Genetic Modifiers In FTD

In 2023 we hosted researchers from the Raddamaker lab. 

GRN Modifier Webinar

Screen Shot 2024-09-20 at 11.28.02 AM.png

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

Screen Shot 2024-09-20 at 11.37.52 AM.png

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

Screen Shot 2024-09-20 at 11.46.23 AM.png

Brain Function In Familial ALS

In 2023 we hosted a talk from Dr Kiernan. 

Brain Function Webinar

Screen Shot 2024-09-20 at 11.57.03 AM.png
bottom of page