Sorry for your loss. đź«‚
What do you think more people should know about CJD and related prion diseases?
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.*
Discussion
nostr:npub1sh22ss2d64rpv49a554kuelcvjn4996ae4esrg2s7pn83ldy495q8zct5g do you have any educational materials on CJD and prion diseases that could raise people’s understanding on the topic?
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
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.