Prion Alliance is a 501(c)(3) non-profit devoted exclusively to advancing scientific research towards a treatment or cure for human prion disease. Prion diseases are fatal neurodegenerative diseases caused by misfolded proteins and known by various names, such as Creutzfeldt-Jakob disease, fatal familial insomnia, and Gertsmann-Sträussler-Scheinker disease. At present, there is no treatment or cure. We — Sonia Vallabh and Eric Minikel — founded Prion Alliance as part of our scientific quest after we learned in 2011 that Sonia inherited a genetic mutation that causes prion disease. We recently defended our PhDs at Harvard Medical School, and now run a prion laboratory at the Broad Institute of MIT and Harvard, where we work on developing therapeutics for human prion disease.
You can donate via PayPal to support our quest:
To learn more about our story, read one of these articles:
- One Couple’s Tireless Crusade to Stop a Genetic Killer, Kelly B. Clancy, WIRED, January 15, 2019.
- Two-part NPR story on Morning Edition & All Things Considered, Rae Ellen Bichell, NPR, June 19, 2017
- A husband and wife’s race to cure her fatal genetic disease, Kathleen Burge, Boston Globe Magazine, February 17, 2016
- Insomnia that kills, Aimee Swartz, The Atlantic, February 5, 2015
- Computer scientist makes prion advance, Erika Check Hayden, Nature News, October 2, 2014
- A prion love story, D.T. Max, The New Yorker, September 27, 2013
Or watch this talk:
- Antisense oligonuclotides for genetic prion disease, Broad Institute, August 2018.
Also, here are some handy facts about Prion Alliance: