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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:nprofile1qy88wumn8ghj7mn0wvhxcmmv9uq36amnwvaz7tmwdaehgu3wvf5hgcm0d9hx2u3wwdhkx6tpdshsqg8at7phk7p7q65g8wex34u342y6ptklxq5jnf7g6mr3fmnl0d3f5gtx5qrc by nostr:nprofile1qyx8wumn8ghj7cnjvghxjmcpz4mhxue69uhk2er9dchxummnw3ezumrpdejqqgqn8rmhq9g6dpufv8v6x9c3alscxkvs2js4myeuy7rkyw0gpflsrvducqfc and nostr:nprofile1qyghwumn8ghj7mn0wd68ytnvv9hxgtcpz4mhxue69uhhyetvv9ujuerpd46hxtnfduhsqgxufnggdntuukccx2klflw3yyfgnzqd93lzjk7tpe5ycqdvaemuqcjwfhsu 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

Corey Santa Diego 1mo ago

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

MAKE SONGS LONGER 1mo 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.

Corey Santa Diego 1mo ago

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

Globe99 1mo ago

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

Pegah 1mo ago

🫂

damien 1mo ago

🫂

Globe99 1mo ago

Sorry for your loss. 🫂

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

MedSchlr 1mo ago

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

Brian Appavu, MD 1mo ago

nostr:nprofile1qy88wumn8ghj7mn0wvhxcmmv9uq36amnwvaz7tmwdaehgu3wvf5hgcm0d9hx2u3wwdhkx6tpdshsqg8at7phk7p7q65g8wex34u342y6ptklxq5jnf7g6mr3fmnl0d3f5gtx5qrc, 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:nprofile1qyxhwumn8ghj7mn0wvhxcmmvqywhwumn8ghj7mn0wd68yttsw43zuam9d3kx7unyv4ezumn9wsqzp87w8t4r9v6kx7pcldzmwklryk2hgtskhvlywskvs2an658epplxwsm38g

MAKE SONGS LONGER 1mo ago

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

MAKE SONGS LONGER 1mo ago

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.

Emma 1mo ago

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:nprofile1qqsdcnxssmxheed3sv4d7n7azggj3xyq6tr799dukrngfsq6emnhcpspz4mhxue69uhhyetvv9ujuerpd46hxtnfduhszxmhwden5te0w35x2en0wfjhxapwdehhxarjxyhxxmmd9udlvtc2 and the team to keep building.

MAKE SONGS LONGER 1mo ago

Never stop!!!!!

it's me, real fake 1mo ago

Error 404 - Page Not Found

MAKE SONGS LONGER 1mo ago

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

try this one:

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

MAKE SONGS LONGER 1mo ago

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/

nostr:nevent1qvzqqqqqqypzp87w8t4r9v6kx7pcldzmwklryk2hgtskhvlywskvs2an658epplxqyd8wumn8ghj7ur4wfshv6tyvyhxummnw3ezumrpdejz7qg3waehxw309ahx7um5wghxcctwvshsz8thwden5te0dehhxarj9e3xjarrda5kuetj9eek7cmfv9kz7qpq608jd820my649g3jsvr9xpq45l8n20l5wkjc27mmqq5k5vkm5p6su4ym9s