Genetic ALS & FTD Advocate, C9orf72 Carrier , Executive Director Genetic ALS & FTD : End the Legacy - East Bay California https://bsky.app/profile/jeanc9orf72.bsky.socialhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lz4qzgldr22aThe FDA's case study for the Tofersen approval makes clear NFL is a viable surrogate marker for ALL ALS cases. We can stop saying "ALS has no biomarkers" - not true. Now we need to find drugs that match tofersens dramatic reduction in NFL. t.co/fKqt6P2WRH Thanks @alsctr.bsky.social for the tip! https://t.co/fKqt6P2WRH18 Sep 2025 16:21 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lz4qzgldr22ahttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3ly4bnbcuhs2mI am so impressed with all who do so much for our movement. I have to share this summer has been a challenging one for my family as my father in law (a physician) suffered and passed away from pancreatic cancer. My husband spent 6 weeks with him two states over. 1/2 [contains quote post or other embedded content]05 Sep 2025 18:21 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3ly4bnbcuhs2mhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lx72q73dkc2mRandom people representing themselves allow for those hosting meetings to get around accountability and institutional knowledge . [contains quote post or other embedded content]25 Aug 2025 03:30 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lx72q73dkc2mhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lwtz3itxfk2fI’m lucky to be able to advocate with incredible people like Bill! [contains quote post or other embedded content]20 Aug 2025 18:01 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lwtz3itxfk2fhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lwejapjc422xWell deserved!! [contains quote post or other embedded content]14 Aug 2025 14:08 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lwejapjc422xhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lvonxdolsk2hThe only way we will get broad adoption of brain health prevention strategies is to empower patients and their clinicians to use neurological biomarkers to provide feedback on brain health in advance of not developing dementia in one’s old age.05 Aug 2025 21:33 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lvonxdolsk2hhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lv6nn54q6s2uI had the privilege of participating in my first #allals #preventals visit yesterday @UCSF! I appreciated the professional and cordial work of coordinator Amy and investigator Dr Rosow. My first experience with handheld dynamometry, much quicker than an emg.30 Jul 2025 12:45 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lv6nn54q6s2uhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3luw4s73xgc2bWhy is this so controversial? Why are academics endorsing vague promises of “hope” over evidence things work? [contains quote post or other embedded content]27 Jul 2025 03:22 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3luw4s73xgc2bhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lut5lzjwz22eLifelong cognitive surveillance is dystopian and it’s wild groups try to make it happen.25 Jul 2025 22:59 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lut5lzjwz22ehttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3ltpqhzg3cc2fIt is accepted about 10% of people told they have ALS actually have another condition. I don’t think this encompasses people with PLS either. The discussion on appropriate time to dx those at genetic risk assumes only a 100% accurate rate is acceptable. It doesn’t make sense!11 Jul 2025 21:01 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3ltpqhzg3cc2fhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3ltgb7ovsok2gIt is so sad that people will feel forced to say “nfl is no good” to counter obvious anti-scientific propaganda from well funded als non profits when in reality the nuance is “small reductions in nfl especially when not biologically explained is no good”.08 Jul 2025 02:34 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3ltgb7ovsok2ghttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lss2yc6slk2gProblems associated with feeling and function are never discovered by researchers. Problems with survival, sure - that’s how we find biomarkers! But only those living with the supposed impairments can verify if they are having issues with how they feel or how they function.30 Jun 2025 01:49 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lss2yc6slk2ghttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lsmt3qkzbs2eGene therapy for babies for an adult onset disorder will never happen. How would you prove this drug is safe and effective? Trial plan: dose an infant, monitor for safety of development for 20 years, then check back for efficacy at 70?27 Jun 2025 23:44 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lsmt3qkzbs2ehttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lshbclp7lk2xAn interesting article articulating issues with concepts of disinhibition and how it removes agency from people. The picture is more complex in BvFTD but for prodromal or even early full phenotype stages it seems an apt comparison. https://aeon.co/essays/how-the-myth-of-phineas-gage-affects-brain-injury-survivors25 Jun 2025 18:43 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lshbclp7lk2xhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lrydjkufzc2eI completed 3 years in the Neurofilament Surveillance Project today. My travel nurse Hope has been an excellent and skilled partner in drawing samples every 3 months. Perhaps I will see her again as part of prevent als!19 Jun 2025 20:12 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lrydjkufzc2ehttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lrhnmrb6i22zThe instability of the c9 expansion is an under looked at potential harbinger of disease onset. [contains quote post or other embedded content]13 Jun 2025 04:58 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lrhnmrb6i22zhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lqq5y3tcos2gTake a group of people - compare them to another. Find any difference (even within normative range) and call the lower of the two cognitively impaired. Is that good science?03 Jun 2025 20:47 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lqq5y3tcos2ghttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lqh4xctnxc2rWhen you hope your research subject are not reading what you are publishing about them - that may be a clue you are up to something a bit suspect.31 May 2025 06:34 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lqh4xctnxc2rhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lq4svth2ms25FTD researchers like to use creepy cut outs of people’s faces with out even hair to gauge how people rate the emotion the person in the image is feeling. I always felt as a human you evaluate things in context like this sign says from the Exploratorium in SF.27 May 2025 04:08 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lq4svth2ms25https://bsky.app/profile/jeanc9orf72.bsky.social/post/3lou3owlqyc2nHow do you write an informed consent document when the goal of your research is to prosecute a case the people you wish to study are sub human?10 May 2025 23:26 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lou3owlqyc2nhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lot7apuy2k23ALS is known for a few things - progressive motor neuron loss and phase 2 trials that have a positive clinical readout that is not replicated in A larger phase 3 powered for efficacy questions.10 May 2025 14:57 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lot7apuy2k23https://bsky.app/profile/jeanc9orf72.bsky.social/post/3ln5zzhsqzc25Any cognitive inquiry is invasive and unpleasant. Surveillance over repeated serial inquiries even more so. At an extreme lifelong cognitive surveillance is not compatible with quiet enjoyment of life.19 Apr 2025 11:32 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3ln5zzhsqzc25https://bsky.app/profile/jeanc9orf72.bsky.social/post/3lmv4p3ae7s2yHow can behavior be mildly impaired? This presupposes behavior that is preferred, which seems more up the alley of advice columnists or religious leaders. Behavior that rises to dangers to the person or others is more clear , but would never be mild.15 Apr 2025 22:26 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lmv4p3ae7s2yhttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3lmgdejay6k2eLinking environment to adult onset conditions is foolhardy especially if you can’t prove a dose dependent response. It’s irresponsible the way some run with incredibly flimsy data in an attempt to make people change their lifestyle.10 Apr 2025 01:16 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3lmgdejay6k2ehttps://bsky.app/profile/jeanc9orf72.bsky.social/post/3llwkrbfook27Today would have been my mom Kathleen Cronin's 76th birthday, had ALS not taken her at 70. I recall with fondness and amazement the hustling she did to work grant based projects connecting lower income families to library services in New Rochelle…03 Apr 2025 18:46 +0000at://did:plc:b4k3xzelwtqucx2u7avmarlm/app.bsky.feed.post/3llwkrbfook27