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.*
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.
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