Genetic ALS & FTD: End the Legacy

We are excited to share the recording of the fascinating conversation with our own Mindy Uhrlaub and the esteemed Dr Rita Sattler on their experiences developing the National Academies of Science, Engineering, and Medicine report on ALS. https://loom.ly/CdPMKh8

Our team is excited to be at the inaugural ALS Nexus meeting hosted by the ALS Association. We are delighted to have our own Jean Swidler speaking on a panel this coming Wednesday and glad to be connecting with many impacted by ALS along the way. We are looking forward to bringing forth our community perspective and appreciate the invite!

We are still amazed at the fact we pulled together 40 + amazing people impacted by Genetic ALS & FTD plus many allies for a weekend of connection and collaboration at our first Genetic ALS & FTD Community Summit! Thanks to Video Director Rod Malloy, learn more at https://lnkd.in/gNUSmbeE And eternal thanks to all our speakers, event partners, and sponsors. #EndTheLegacy #C9orf72 #GRN #FTD # ALS

This is the last chance to sign up for tomorrow's fascinating discussion regarding the National Academies' report on ALS and especially its implications for the genetic ALS community. Tuesday, July 9th at 6 pm Eastern. The topics of interest for the genetic ALS community are similar but often unique from broader ALS contexts. End the Legacy is proud to provide a space where we can discuss the issues that matter to us. https://loom.ly/Qd9W03U

June was a busy month for End the Legacy, and we are proud to share this short report with you! Of special note, be sure to sign up to attend a fascinating discussion on the NASEM Report on ALS, specifically for the Genetic ALS and FTD Community. https://lnkd.in/gKXtwg_y

When the National Academy of Science, Engineering, and Medicine announced they were doing a comprehensive evaluation of ALS to prepare a report for Congress, we worried- would the genetic voice would be missed as it had been many times before? Thankfully, our own Mindy Uhrlaub stepped up for consideration and was awarded one of only a few patient advocate slots on the committee developing the report. She was joined by many prominent voices in the clinical and research realm for ALS, including the prestigious Dr Rita Sattler. Join us on Tuesday, July 9th, at 6 pm Eastern when both of these dedicated committee members will join us for a brief presentation and lively discussion about their experiences developing the report and some highlights of the final product, especially for the genetic community. Ample time for discussion and Q & A's will be available. Sign up here :https://loom.ly/hcr6d8U

We have reached the end of our series on just some of the many unfounded conjectures some researchers have shared with the world that, if taken to their logical conclusions, would mean horrors for our families. Before we share the background on today's installment, we must raise that prior to our founding, no one was looking after the interests of the genetic ALS & FTD community. Our families were raising funds for many, but no group objected as these attitudes became entrenched in the research world. We have the chance to change the tide and End the Legacy, but only with your support. https://lnkd.in/gzmxMsiR For this last statement, we include any that begin with "C9orf72 carriers are..." because any way you end that sentence, you are stereotyping a broad community of people, likely over a million persons globally. We are all individuals from many walks and stages of life, and we are all unique. We deserve to be judged and treated as anyone - based on our merits and not our genetic makeup. For those curious, the most common way that phrase will end is "c9orf72 carriers are charming," charismatic, or good talkers. Compared to the statements in prior days, this surely is less denigrating, and on an individual basis, these might be considered compliments. But when an essential personality trait is ascribed to your genetics rather than your essence, you are robbed of something intrinsic to human dignity. We hope we can make the people studying us understand this.

We are almost done with this painful series of posts. Thank you for sticking with us as we make sure no one can any longer pretend these abhorrent attitudes do not exist. We can all be clear about the stakes for our community in ensuring we have a strong patient movement focused directly on our needs and interests. In today's installment, the researcher insists in a public talk that C9orf72 carriers are "crazy" at any age, even the 25-year-olds who sign up to be research subjects for this researcher. When pressed on what cognitive tests showed, the researcher was clear we do not need evidence to show this "craziness" as everyone "knows" this is true. This needed to be said as the cognitive tests did not show any difference between the C9orf72 carriers and controls.

This week, we are blowing the whistle on how some researchers denigrate and demean our families. We feel that sunlight is the best disinfectant, so we will continue with today's statement. In a public speech, this researcher conjectured that they have trouble discerning C9orf72 FTD patients in their waiting room from their spouses, as people in C9orf72 families have lifelong frontal cognitive disturbance and attract spouses who are similarly impacted. This was said despite the researcher's knowledge of C9orf72's incomplete penetrance and pleiotropic properties. This was said even though C9orf72 FTD manifests on average at age 58, and marriages are likely from many years prior. This was said despite the fact the researcher did not do any cognitive exam on the spouses in their waiting room but felt very comfortable diagnosing them, and all c9orf72 spouses, with mental issues. We condemn casting aspersions on all C9orf72 carriers and any of our spouses in such categorical terms. We all deserve the right to be evaluated on an individual basis. Genetic ALS & FTD: End the Legacy is proud to be the first and only organization dedicated exclusively to the needs and interests of the genetic ALS & FTD communities.

This is the most shocking of all statements with a clearly developed world view that is horrifying. This was said in public. We think this has no place in the discourse on these diseases. We are the only group calling these calumnus statements out, but we welcome all to join us. Due to the “insidious” onset of FTD, all those at risk should be banned from birth from any position that holds responsibility over others, in particular pilots or air traffic controllers. Instead, they should be restricted to jobs that hold no responsibility. The researcher in question ignores the later-in-life onset, incomplete penetrance, and mild nature of FTD in the early stages. They also ignore codes of standards for jobs with high responsibility. Finally, they seem not to understand that all jobs in society are important and that if someone is “dangerous” to others, they could do harm in any position—food service, environmental services, childcare. Our children and descendants deserve the freedom to pursue careers that are compatible with their interests and abilities.