On a personal note, today marks 21 years since losing my mom to CJD.

At the time, I sounded the alarm about prion disese and the NPDPSC in Yahoo groups. Quickly got my hand slapped by them.

The Internet has changed a lot in 21 years. I cannot be censored now on Nostr, and you can imagine I did NOT go quietly from the discussion at the time.

I have, to this day, always done my part in trying to "solve" or "cure" the most insidous disease on this planet and I always will.

If I am ever "quiet" or even "silent" about prion disease in the US, it is NOT due to lack of activity or concern.

At some point, I chose to live my life. Normal. Boring. Drama-free.

If you would like to support the work that I have supported since 2012, here is the information.

The work of nostr:npub1l40cx7mc8cr23qamy6xhjx4gng9wmuczj2d8ertvw98w0aak9x3qyxmh7n by nostr:npub1zvu0wuq4rf5839sangchz8h7rq6ejp22zhvn8sncwc3eaq987qds66w2ya and nostr:npub1m3xdppkd0njmrqe2ma8a6ys39zvgp5k8u22mev8xsnqp4nh80srqhqa5sf is vital for our future.

*I will NOT be responding to ANY conspiracy theory comments. Thank you.*

https://memory.ucsf.edu/people/michael-geschwind

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Discussion

Prions are terrifying. Sorry for your loss (even if it was a while ago).

Thank you 🙏🏻 while it was long ago, it was not the only loss to CJD. I’ve lost two uncles and my mom to it. Nov 12 is CJD awareness day, so I can mention again, though I’m not much of a believer in awareness campaigns.

Me neither, unless there's an impactful call to action.

Prions: even less alive than viruses, yet still "reproduce". Bad stuff.

🫂

🫂

Sorry for your loss. 🫂

What do you think more people should know about CJD and related prion diseases?

nostr:npub1sh22ss2d64rpv49a554kuelcvjn4996ae4esrg2s7pn83ldy495q8zct5g do you have any educational materials on CJD and prion diseases that could raise people’s understanding on the topic?

nostr:npub1l40cx7mc8cr23qamy6xhjx4gng9wmuczj2d8ertvw98w0aak9x3qyxmh7n, I'd be happy to develop some educational materials on CJD and prion disease. I did care for a number of patients with CJD during my neurology training, and it is a devastating disease. I'm sorry for your loss, nostr:npub1nl8r463jkdtr0qu0k3dht03jt9t59cttk0j8gtxg9wea2russlnq2zf9d0

Thank you 🙏🏻 it’s rare to find doctors who’ve witnessed it, so thank you for your work!

I think folks need to know that, while there is currently NO cure, there are various routes to a cure being worked on. One or all of these are promising, and even if just one works out, we could be solving this in a decade or LESS.

I am not prepared for this mentally or emotionally, but intellectually, I'm tapping my foot...

I am confident I will see the cure in my lifetime. I will witness this.

The best part? We manage the cure for CJD and the cure to more neurodegenerative diseases is sure to follow. See ya, Alzheimer's, ALS, and more.

The thing has moved from caring about why prions misfold, to simply solving this. Let's save lives. We've had 250 years to answer the misfolding question, let's move on and save lives already. (Which means pharmaceutical cures).

Let's get this shit done and have it over with in the 2030s.

Heather you are such a shining light. I am so sorry to hear about your mom. I hope we can help make MedSchlr to be a thriving place of learning where information and discussion can flow so people can protect their health. Greatly appreciate your support. It’s stories like this that help nostr:npub1m3xdppkd0njmrqe2ma8a6ys39zvgp5k8u22mev8xsnqp4nh80srqhqa5sf and the team to keep building.

Never stop!!!!!

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it was there earlier... welcome to my world.

try this one:

https://www.ucsfhealth.org/providers/michael-d-geschwind

Thanks for the outpouring of love today, Nostr.

If you'd like to donate to UCSF research:

https://memory.ucsf.edu/about/support-us

And there's also the epic team at Prion Alliance. They were lawyers and went back to school to learn biochemistry to research a cure for prion diseases. There are probably no bigger heroes on this planet; they've given their lives. This route was not for me, so I have the utmost respect for Sonia & Eric.

https://www.prionalliance.org/

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