Register for a great event where two prestigious authors will discuss a landmark paper on ALS Biomarkers with a great group of panelists, including ETL's own Jean Swidler. bit.ly/4cqIWvt

Thank you Alzforum for highlighting this familial #Alzheimer's story and your shoutout of the important work we do Youngtimers. There are people with FAD in the DIAN-TU trial living past their estimated symptom onset! alzforum.org/news/conferenc….

It’s so amazing the resources that are available now, which never were when my mother was eager to talk to anyone about this!

Please note no tax payer dollars to pharma required for these approaches. Or reducing FDA scrutiny to benefit pharma needed for these approaches.

ALS is a terminal illness marked by progressive paralysis. FTD is a terminal illness marked by progressive dementia. In a sizable minority of both diseases, the cause is genetic, and many of the genes implicated can cause either or both diseases. #ALS #FTD #EndTheLegacy

It’s so sad so many academics tacitly or explicitly endorse these narratives about things with no evidence.

Good luck, Taryn! We cheer you on for ensuring that any meeting discussing the genetic ALS and FTD community has a public representation of those impacted. ETL is proud to help ensure our community's voice is no longer lost in discussions and debates about these diseases!

There is no good evidence for any environmental factors leading to ALS, with the exception of age.

Also should age really be considered environmental? It’s a fundamental aspect of organic matter that it ages. Totally apart from all other outside forces that may or may not impart impact.

The folks who discover and define developmental disabilities are those who serve young people impacted by disabilities of development. The assertion that #c9orf72 is such a disability despite only being “found” by the study of a dx with an average onset of 58 is an absurdity.

Jean C9orf72 It's definitely important to emphasise the difference between a gene causing a disability which affects "typical" growth, development and/or functioning, and a gene (potentially) having effects during development which *may* increase vulnerability to a later disorder

Member Linde Jacobs’ got a successful proclamation for #FTDAwareness week in Wisconsin for National FTD Awareness week September 22-29 The AFTD

Is it appropriate to tell an 18 year old - who does not have complaints of academic achievement - that they have a learning disability? This is in the context of a research study about a disease that manifests on average close to 60.